Thursday, May 16, 2013

Tecfidera (BG 12) And PML

English: Pills Polski: Pigułki
If you are currently taking Tecfidera, please take part in my Tecfidera patient poll (click here).

Over the last month or so, there’s been a rising crescendo of concern among MS patients about the possible link between the newly approved oral MS drug Tecfidera (formally known as BG 12) and the deadly brain infection PML (Progressive Multifocal Leukoencephalopathy). I’ve received many anxious emails on the subject, and Internet MS forums and Facebook pages are rife with alarm over the perceived recent spate of bad Tecfidera news.

As long-time readers of this blog know, I’m not a big fan of Big Pharma, to say the least. In fact, I hold them in regard only slightly higher than the New York Yankees, who I am convinced are the essence of evil incarnate on earth. But I am also not a big fan of fear mongering, and when reviewed objectively, the facts behind the alleged link between Tecfidera and PML simply don’t warrant the level of anxiety recent reports have fomented. In fact, it seems that rivalries in the Big Pharma sandbox may be playing a role in all the hyperbole, but more on that later.

As most MSer are aware, PML is a brain infection that most often occurs in patients experiencing severe immunosuppression, such as those suffering from HIV/AIDS. In the context of MS, the infection is most closely linked to the drug Tysabri, whose mechanism of action often reduces immune system surveillance of the central nervous system quite drastically, opening up the possibility of opportunistic infection by the JC virus, which causes PML. Of course, it is this same mechanism of action that makes Tysabri so effective (the latest figures indicate that Tysabri therapy results in an 81% reduction in relapses, a 64% reduction in disease progression, and one in three RRMS patients appear to be free of disease activity for a prolonged period of time – click here for an exhaustive breakdown of Tysabri, its effectiveness, and PML). Despite Tysabri’s efficacy, PML is a real concern for those taking it, as 347 Tysabri patients have contracted the potentially deadly infection (approximately 120,000 patients are currently taking the drug).

Recently, it was revealed that four cases of PML occurred in German patients taking the psoriasis drug Fumaderm, from which Tecfidera was derived. It’s important to note that although the two drugs are similar, they are not identical. Fumaderm is a compound of dimethyl fumarate and three other related chemicals. Tecfidera is made only of dimethyl fumarate. Fumaderm has been used to treat psoriasis in Germany and some other European countries for about 20 years, with much success (click here), and is generally considered to have a benign side effect profile.

Both Tecfidera and Fumaderm do have immunosuppressive properties. In Tecfidera’s phase 3 DEFINE trial, it was found that the drug reduced lymphocyte counts in treated patients by about 28%. Lymphocytes are immune system cells whose mission it is to combat infection. These same cells are implicated in the MS disease process, and it is this depressive effect on lymphocytes that could well account for Tecfidera’s abity to fight the symptoms of MS. However, 4% of trial subjects (1 in 25) experienced a more severe form of lymphopenia (the medical name for a reduction in lymphocyte counts) which could make them vulnerable to opportunistic infections, requiring them to cease taking the drug. Recovery of lymphocyte counts after cessation of Tecfidera should be quite robust, based on  years of experience with Fumaderm. (Click here for the entire DEFINE trial report)

A look at the four Fumaderm PML cases is quite revealing (click here.-site requires free membership, well worth it). In one case, the patient was not actually taking Fumaderm, but a version of the drug made by a compounding pharmacy which included a chemical not found in Fumaderm, which could have resulted in a formulation more potent or otherwise problematic than the factory produced drug. Another patient had sarcoidosis, a potentially deadly autoimmune disease, and had previously been treated with powerful immunosuppressive drugs. A third Fumaderm PML patient had cancer, and had been treated with Efalizumab, a drug in the same family as Tysabri that has a known risk of PML.

Two of the Fumaderm PML patients had severely depressed lymphocyte counts for two and five years respectively before developing PML. In Germany, the prescribing guidelines for Fumaderm require that patients get blood tests done to check cell counts every month for the first six months they are on the drug, and then every two months thereafter to check for depleted lymphocyte counts. If patients are found to have significant lymphopenia, the guidelines call for dosages to be adjusted or the drug stopped altogether. Apparently, this regimen was not followed in these two cases, as the patients’ lymphopenia was somehow allowed to persist until they developed PML. It’s quite likely that had the lymphopenia been addressed far earlier, neither patient would have contracted PML.

So, what should concerned patients take away from all of this? Tecfidera does depress white blood cell counts, and this effect quite likely plays a large role in its therapeutic value. However, 4% of treated patients can be expected to experience a more severe drop in lymphocyte counts, which could open them up to opportunistic infections like PML if left untreated for an extended period of time. That’s the bad news. The good news is that this drop in cell counts is easily detected by standard blood tests. Once such a decrease is detected, the drug can be stopped and any potential danger averted.

For reasons that I can’t explain, the FDA guidelines for Tecfidera only require blood tests done before treatment is initiated and then once yearly for the duration of treatment. Based on the Tecfidera trial data, as well as the experience gathered from the 20 year history of Fumaderm use in Europe, the requirement of just one blood test a year seems misguided. I’m currently waiting for my insurance company to give me the okay to start Tecfidera, and my neurologist is requiring blood tests every other month for all of his Tecfidera patients. As noted above, two of the Fumaderm PML patients had severely depressed lymphocyte counts for two and five years, so blood testing every other month should provide more than ample opportunity to catch any potential problems well before they become very real concerns.

I am by no means a doctor, just a well educated patient, but I would strongly advise all patients starting Tecfidera to insist that the neuro’s test their blood for lymphocyte counts at least every other month. Doing so should largely eliminate any chance of PML and set many a mind at ease. Despite its similarities to its cousin Fumaderm, Tecfidera is a brand-new drug, and although all signs point to it being a very safe medicine, I think it prudent to err on the side of caution. If your neuro resists, print out the DEFINE trial results and show him/her the data on lymphopenia, which can be found on the ninth page of the study. I always urge patients to educate themselves and to self advocate. Here’s the perfect opportunity to do both.

In short, all of the recent concerns about Tecfidera and PML appear to be hugely overblown. To put things in context, Tysabri has seen 347 cases of PML in approximately 260,000 patient hours of drug exposure. Fumaderm has seen four cases of PML in approximately 180,000 hours of drug exposure. It’s been noted that Fumaderm is not generally given as a long-term therapy. However, at least one study researched psoriasis patients who have taken the drug for up to 14 years, with no apparent added risk associated with long-term use (click here). Based on the DEFINE trial results, the large majority of Tecfidera patients, 96%, should experience no problems whatsoever with lymphopenia. Regular blood testing should ensure that patients who do experience clinically significant drops in lymphocyte counts avoid any potential problems.

The fact that Tecfidera is an oral drug that appears to be almost twice as effective as the injectable CRAB drugs, and may have neuroprotective properties to boot, should make it a very valuable weapon in the arsenal against MS. Like all of the current MS drugs, it is not a cure, but it will hopefully bring many patients some significant relief from this terrible disease. Using all of my self-control, I'll refrain from going on my usual rant about how the focus of pharmaceutically funded MS research on immune system suppression and modulation does absolutely nothing whatsoever in the effort to find a cure for the disease, but it doesn't. And that sucks. There, I said it. I couldn't help myself.

Oh, I almost forgot. About those shenanigans in the Big Pharma sandbox: it appears that the reports of potential problems with Tecfidera were first brought to the attention of the FDA and the general public by Teva Pharmaceuticals, makers of Copaxone, one of the CRAB drugs that are currently considered the first-line drugs given to new MS patients (click here). Guess which MS drugs are most threatened by the potential success of Tecfidera? Yup, the CRABs, of which Copaxone is currently the most prescribed. With Copaxone sales of $4 billion (yes, billion) in 2012, Teva has about 4 billion reasons to try to delay Tecfidera’s entry into the market, or to stir up concern among the drug’s potential consumers. Not that I would ever accuse any Big Pharma players of partaking in such underhanded behavior. Gee, I sure hope the Yankees win the World Series…

Not.

(For a comprehensive overview of the how's and why's of Tecfidera, please see my previous post on the topic, by clicking here)



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176 comments:

  1. Well said Marc! Thanks for, once again, cutting through the bullshit and hyperbole to clarify an important issue.

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    1. Thanks Mitch, you're a good bullshit cutter yourself… And that's no hyperbole…

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    2. Hello, MS does suck! But I'm not sure if anyone else has heard this from their specialist and it doesn't sound like it since I read most every chat. I was diagnosed in the late 80's at the time only one of about 300 teenagers with confirmed MS a lot has changed in 24 years. But the best thing I've heard and some people listed how long they have had MS is that a large percentage of patients after dealing with MS for 20 years never here from it again. Well I can only cross my fingers but I have not had any symptoms in over 5 years. I took Avonex for 7 years and had normal side affects but only for 12 to 36 hours after the injection. I feel very lucky and blessed to be able to share this.

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    3. I have been on Tecfidera for two weeks now, with no side effects. My friend sent me a study on Protandim and Tecfidera on how Protandim's Nrf2 was better to a head to head study done by Biogen Idec. Not sure if I should take one or the other or both?

      Confused

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    4. I got diagnosed 8 years ago and I have no idea what to do still I was on Copaxone for 2 years and now I'm taking tecfidera going crazy with no help cuz nobody really knows what I'm going through I have grand mall seizures that put me in hospital for days I just don't know what to do!!!! Can somebody explain to me the the major side effects I'm goin through my left leg is paralyzed and I didn't get diagnosed until I was 28 when I have my first grand mal seizure!! can somebody help me a little bit with this I don't know what to do!!????

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    5. So sorry to hear about your situation. Unfortunately, neither I nor anybody else here is really qualified to give you any hard and fast advice. My best advice would be to find the finest MS neurologist in your area and put yourself in his or her care. Don't settle for anything less than the best possible medical care. It's unfortunate, but you must become your own best advocate. Wishing you the best…

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  2. Hi Marc,
    I asked my neuro about trying Tecfidera (I'm currently on Rebif, and been on Avonex, Tysabri, and Copaxone in the past). He told me that there have been reports of 'explosive diarrhea' as a side effect. Not something I could deal with since I am bedridden. Have you heard of any such reports regarding this possible side effect?
    Thanks!
    Debbie

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    1. Debbie, a lot of new Tecfidera patients experience some pretty severe gastrointestinal distress during the first four weeks or so of treatment. Not everybody, mind you, but certainly something to take into account, especially if you are bedridden. Wishing you the best…

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    2. I can attest to the explosive diarrhea. I'm only on week 4 of tecfidera. Immodium, prilosec & zofran have made it "tolerable ". The rash /flushing seemed to build to build to a climax at around week 2 which got pretty intense and somewhat scary. Benadryl & 325 Mg aspirin are working on that. Bunch of drugs for side effects, but I am cautiously optimistic. Afterall, if you've made it to this point, the alternatives aren't that plentiful. Good luck to you!

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    3. I am one of those folks like Judy, who posted on 5/17, who always have the most severe reactions to every drug I remember taking. I developed severe lipoatrophy and nearly reached skin necrosis with Copaxone (sad, because it had an amazingly positive effect against my MS). I had severe flu symptoms for 5/7 days with Avonex (even after 4 months of treatment). And with other non-MS medications, I always need about a quarter of the dose to feel twice the side effects, and sometimes before the doctors say I should be able to feel anything. But Tecfidera, not the same story. Disclaimer: I'm only on week two, so maybe I have a surprise in store. I've had no flushing and very mild GI symptoms, which is amazing, because I have a host of GI problems independent of MS, and nausea, vomiting, cramping, etc are commonly exacerbated by medications. I have taken zofran for the nausea, which also helps slow my GI action, so I'm sure that's helped, but I've only taken it about three out of my 10 days of Tecfidera treatment. No diarrhea at all. I am, however, experiencing an increase in muscle cramps, pain, spasms, weakness. Maybe a flare? Maybe a reaction to Tecfidera? Who knows. I am a research scientist and have followed the BG12 trials from the start. I was afraid of the GI troubles (MS already causes me a lack of bowel control in addition to my other GI troubles), but clearly they don't happen right away to everyone - not even to everyone who usually gets the worst. I chose to try it, because the overall risks associated with Tecfidera are less than with any other MS disease modifying therapy. I agree with Marc about needing to stay on top of lymphocyte counts. But other than that, there's no statistically significant evidence of any increased risk of PML, liver or kidney dysfunction, skin degradation/infection, or other serious problems that are commonplace in the rest of the MS tool kit. Debbie (and others), if you do decide to try it, ask for zofran and have some immodium AD on hand just in case. Also, if it helps to know, the terminal half-life of the drug is only one hour. Even with the extended-release formulation of Tecfidera, no circulating drug is present 24 hours after taking a dose. Further, there is no accumulation of the drug over time with repeated doses. So, if you have a bad reaction in any way, recovery back to the pre-drug state is very rapid. Best of luck if you decide to give it a try. -Heather

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    4. Hello!
      My doctor & I are in conversation about changing from Avonex to Tecfidera. I must admit I am somewhat cautious due to the GI side effects. I was wondering how you are managing with the drug now.
      I do hope you are doing well. This certainly sounds as though it is a very promising drug.
      Prayers for the continued journey~

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    5. Hello everyone- I am on week three of tecfidera- and no diarrhea here. I have experienced flushing/ rash when I take the medicine on an empty stomach. The meal you take it with makes a difference too. I used to be a breakfast smoothie type of person, but smoothie causes a rash. The rash/ flushing lasts 20 minutes tops then goes away- I still prefer it to the injections. So far tecfidera has been great for me, and the fact is, side effects are possible- but not a definate.

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  3. Thanks Marc! Truly appreciate the time and effort you put into your blog. You have broken down the Tecfidera hype to an easy to understand article.
    All the best to you <3

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    1. Thank you. It's really hard to cut through all of the smoke and mirrors that surround all of these drugs, because so much money is riding on them. I try to do as much research as I can, and I figure if I can get things figured out it would be selfish of me to not pass the info along. We're all in this thing together…

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  4. I wish you the very best on this Marc and hope this may help you. There's a facebook group for Tecfidera users and from what I'm reading of the side effects I'm staying away from this one, PML aside. It seems any medication I try I experience many of the nasty "rare" side effects listed. I'm curious also as to how you feel about the combination of stem cell and angioplasty for ccsvi. I do truly wish you the best with this drug. Hugs, Judy (maryland usa ms ccsvi group)

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    1. I've also read the pages about side effects, and they certainly don't sound pleasant. However, you have to remember that the people who tend to post most are those who are experiencing trouble. Those who aren't having a rough go of it tend to just go about their lives, so you wouldn't expect to see many "started Tecfidera, doing great" posts. Certainly a few, but many more on the negative side. Just human nature.

      I have to admit I've become somewhat disillusioned about CCSVI. I get a lot of email from folks who have had the procedure, and about 80% of it relates negative experiences. Little to no benefit, I mean. I still think CCSVI can help with a subset of symptoms, and even Dr. Arata out in California is now saying he doesn't think that blood flow is actually the problem, but rather that angioplasty is impacting the vagus nerve, which helps reregulate the autonomic nervous system. I do think it's very important to keep researching CCSVI, though, because it is important to find out what the systemic effects of MS are. Obviously, they are not just confined to the CNS.

      I'm much more optimistic about stem cells, however, the technology at its current state isn't quite ready for prime time. Patients seem to experience some initial benefit, but nothing sustained. Makes sense, since the disease is still active, so any repairs would be subject to the disease process.

      Thanks for commenting…

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    2. I had the CCSVI treatment two years ago, and it helped me dramatically! Everyone's situation is different, but it completely improved my vision, gait, balance, coordination, and energy levels. I can not say enough about it, or the work Dr. Mehta in Albany, NY has don for myself and my family.

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    3. Marc is right. I am on week 3 as if today and I can count on one hand how many stomach upsets I've had (2), flushing (4). However the nausea is different. I experienced it almost every other day but no vomiting. When I get more acclimated to it, I don't forsee any problems.

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  5. Thanks for writing this, Marc! I'm starting Tecfidera next week and I'm definitely keeping track of all the news on this drug. Your insights are very helpful.

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    1. Good luck with Tecfidera, may the force be with you… Don't know why I said that, I'm not a Star Wars fan at all… Nevertheless, may the force be with you…

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  6. I'm in line to start Tecfidera as well, dx in March with RRMS. Just want to add that I really love your blog and have found it to be a comfort and breath of fresh air throughout this process. Thank you for doing what you're doing!

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    1. Thanks for your kind words. Sorry about your recent diagnosis, but it seems that treating early gives patients the best chance to avoid a severe course of the disease. Just take it day by day…

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  7. Marc do you have the link for the DEFINE trial. Is there one as I have not been able to find it....
    Thanks

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    1. Karen, the link is at the end of the fifth paragraph, above…

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  8. Thank you for a very good article. IMO, the pml concern with tecfidera is overblown. However, the adverse events are seriously underplayed, IMO. Honest people can disagree and that is perfectly ok. But when I look at the three studies most often referenced in regard to safety issues... well, it is quite obvious that a great many patients will encounter significant side effects. Take a look at these studies and decide for yourself.

    Long term safety aspects of systemic therapy with fumaric acid esters in severe psoriasis.
    http://www.ncbi.nlm.nih.gov/pubmed/12932244


    Fumaric acid esters for severe psoriasis: a retrospective review of 58 cases. http://www.ncbi.nlm.nih.gov/pubmed/16120141


    Fumaric acid esters in the management of severe psoriasis.
    http://www.ncbi.nlm.nih.gov/pubmed/17362235

    Thanks again for your excellent articles

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    1. Glad you find value in my blog posts.

      It's important to remember that all of the studies you cited referred to Fumaderm, which although similar to Tecfidera is not identical. Tecfidera is comprised solely of dimethyl fumarate, an ester of fumaric acid.

      In addition to dimethyl fumarate, Fumaderm also includes three other esters of fumaric acid. Therefore, while comparisons between the two drugs can be useful, drawing any hard and fast conclusions would be a mistake.

      Certainly, gastrointestinal and flushing side effects appear rather common in Tecfidera, but we have yet to see if they are as prevalent or intense as those seen in Fumaderm patients. One would think that the additional ingredients in Fumaderm would increase that drugs side effect profile in comparison to Tecfidera.

      It's also important to note that although the cited studies do point out Fumaderm's side effect profile, they all conclude that it is a safe, effective therapy for severe psoriasis.

      Of course, Tecfidera is a brand-new drug, and nobody can say for sure exactly how effective or problematic it may turn out to be. Only time will tell.

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  9. Have been on tecfidera for 3 weeks now. No gi disturbances, the flushing is a little odd can occur 1 to 8 hours post pill and lasts about 30 minutes. I look a little odd red like a lobster and mildly pruritic. All in all no problems.

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    1. Thanks so much for your input. I hope other Tecfidera patients also contribute their experiences.

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    2. Been on 3 weeks, doing good. My doctor recommended I take an enteric coated aspirin with each pill. I have GERD so I take my Prevacid 1 hour before breakfast and 1 hour before dinner. Regardless of the claims that it can be taken with or without food, my MS Neurologist said take with full meal. No Diarheah, yes gas cramps and red face, neck arms and chest about 6 hours after taking pill, but no itching. My Gosh, compared to the side effects of the Interferons, Betaserons and copaxone, this is EASY. I am very hopeful and excited to see it impact my MS. This is a very positive start! Good luck everyone.

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    3. Hi vetventure just curious about the cost of tecfidera ---can you tell me something about it? Thanks

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    4. I just started tecfidera yesterday.The redness/flushing was about 4 hours after taking the 1st pill. Call Dr. suggested the aspirin, make sure full stomach. So far so good. After 18 years of Betaseron, I am determined that this will work.

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    5. Biogen Idec has great programs in terms of cost. The monthly cost is about $5000. If you have private insurance, they run it through your insurance (may need a pre-approval). Then they collect whatever insurance pays, and $10 from you (for a month's supply), and then they eat the rest. If you have no insurance, they've told me they will make the drug available at no cost (but I've not tested this). If you have state or federal coverage (Medicare, Medical, Medicaid), it is a different story because of federal and state laws. They told me they have programs to try to work with folks, and with their commitment to making the drug accessible, I suspect they do, but I'm not sure of the details. You can check out their website and then call them for details and support. Here's the webpage that deals with these questions: http://www.tecfidera.com/tecfidera-ms-support.html#co-pay

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    6. I can attest to Biogen Idecs Patient Assistance Program, as I have just received my first 4 wks of medication. I have not taken any disease modifying medication since December 2012. I was on
      Tysabri for 20 months before becoming JC Virus positive.

      I am looking forward to taking my first dose after I pick up some aspirin and something to soothe my stomach. Keeping my fingers crossed!

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  10. Marc,
    Have you any insight on AMILORIDE
    http://m.brain.oxfordjournals.org/content/136/1/106.long?view=long&pmid=23365093

    Thank you joe

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    1. Sorry, I don't have any specific insights on Amiloride. I do know one progressive MS patient whose neurologist has prescribed it for him.

      For those unfamiliar with the drug, Amiloride is an antihypertension drug use to treat high blood pressure. Research has shown that it may have neuroprotective properties.

      Many MS patients have autonomic nervous system dysfunction, which can lead to low blood pressure. I wonder if taking this drug in these patients might be dangerous?

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    2. Marc, thank you. If you hear any more, good or bad about Amiloride, let us know any insights.

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  11. My neuro will be starting me on Tecfidera in July after radiation for breast cancer is finished. Last chemo was 1 month ago. Yay! Anyway, my neuro knows how much I hated avonex and the flu like symptoms. Stopped avonex in Dec 2012 when diagnosed with BC. Good news is that I can now tell my oncologist what to look for in my white cell count and also that my blood is checked monthly. (So some good news from having breast cancer??? Lol) I just wanted to say thank you for doing all the legwork and research for the rest of us. It is much appreciated. Googled this drug as soon as I got home and found your blog. Now I have a lot of reading to do on your old blogs! Btw, in my own personal opinion, MS is a worse diagnosis than breast cancer. With surgery and chemo, I am now considered cancer free. With MS, as we all know, I wonder if we'll ever say we are MS free?

    Thank you so much

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    1. Aw crap! The legwork comment was a poorly chosen phrase. I write romance novels. This is what happens without an editor. Sad

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    2. No worries about the questionable word choice. Happens to the best of us…

      So sorry to hear about your medical ordeals. Very happy to hear that you are now cancer free.

      It is important that you do keep track of your white blood cell counts while on Tecfidera . As for my contributions, hey, whatever I can do to help anybody else dealing with this crap.

      Thanks for your input…

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  12. Hello All-
    Just stumbled upon this blog today, and can say I will probably now be a follower. Surprised there is no related Facebook page? Something to consider...

    My personal experience: I was diagnosed 6 years ago. I've been on Avonex and Tysabri. I had to be off Tysabri for 6 months before switching to Tecfidera. Not sure if this was my neuro's choice or a recommendation of drug manufacturer. I had a massive flare two weeks ago, the first debilitating one since my initial diagnosis, just in time to start the Tecfidera. My experience with Tecfidera so far has all been during a flare (which for me means out of control vertigo, fun!). I've been on it just two weeks, I've only experienced a little flushing as a side effect. And it's not consistent. It only happens with some doses, and it happens anywhere from 1-6 hours after ingestion. I have not experienced any of the GI stuff.

    The good news is, at least in the US, is that everyone (regardless of income) qualifies for co-pay assistance. Everyone pays $10. And it's relatively hassle-free. Getting financial assistance with Tysabri was a nightmare. Weird, because it all comes out of Biogen anyway.

    Barbie, I can't imagine having to juggle MS with breast cancer. So happy to hear you are cancer free!

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    1. Eileen , thanks for your input. As for the lack of a Facebook page, my only excuse is that I am Facebook phobic. I know I need to get over it, and that a companion Facebook page to this blog would probably be of value to a lot of people. Might even make things easier for me. First, though, I have to get over the fact that my skin crawls whenever I open up Facebook. Not really sure why.



      It was probably prudent to wait a while after coming off of Tysabri , although it is known that many people do suffer relapses after coming off of that drug. Glad to hear that so far the Tecfidera side effects have not been to Tough.

      Thanks for your comments, hope the new drug works wonders for you…

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  13. If you are JC virus antibody negative (no JC in you), you are theoretically safe from PML. 40% - 60% of people carry it every day. It's a bi-yearly test for me, as a 5 year Tysabri user. I've been told that after 30 years old, if you are still JC negative...the chances are not bad that you could stay JC free. It reduces my chances of PML from 7-9/1000 to zero. Having been on chemo years back, and being long term tysabri client...my chances are too high for any real comfort if my tests ever turn positive. I joke with my neuro about living alone in a room having no contact with the outside world, all in an effort to not get JC.

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    1. Although it's very fashionable to bash Tysabri on some Internet outlets, IMO for a patient with JC negative status, given the drug's tremendous effectiveness, going on Tysabri should be a no-brainer. As you note, JC negative patients have almost no chance of developing PML. Of course, the drug can result in other side effects, but for relapsing remitting patients there doesn't seem to be anything nearly as effective.

      Again, as you note, it's important to regularly test for JC virus if you are on T . Thanks for your observations.

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    2. My understanding is that the test for the JC virus has a certain percentage of false negative results, so that there is always a minimal risk of developing PML. Of course I would expect that to lessen over multiple ongoing tests.

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  14. 2 and a half hours after the first dose (1/2 for the first week) a trip to the local emergency room for severe reaction. Brought out all MS symptoms (seizures and right side weakness) along with hives and stomach upset (4 trips to the bathroom) Perfectly fine with no symptoms before this first pill. I am very lucky my husband was home to take me to the hospital. A day later very weak and extremely tired.

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    1. So sorry to hear about your terrible experience. Must've been very scary, glad that no permanent damage seems to have occurred.

      Unfortunately, some people can't tolerate certain drugs. Tecfidera does seem to have a high rate of initial side effects, but for most people they are tolerable and disappear over time. Not much solace, though, for folks like you who have a terrible we action.

      Wishing you the best, thanks for sharing your story.

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    2. Hey Marc, this is my 2nd week on 240 mg x 2 a day Tecfidera. Is it normal for your stomach to bloat, intestinal cramping, feeling clammy? I have also woke up 2-3 times a night very warm and sweaty like I started menopause again. I do take synthroid for lack of thyroid. I do agree with the posts above, eat a full meal before taking Tecfidera. One benefit so far seems to be I have less cramping in my legs and feet. should I give it some more time?

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  15. Do you know what the lower limit for a WBC count is in order to qualify for Tecfidera? I have asked my doctor and various people at Biogen, and no one seems to know or is willing to throw out a number. I have historically had a low count, so I wonder if this puts me at a higher risk for PML. I read that people with a low count were not included in the study. My understanding is that 4.0 is low-normal. Mine hovers around 2.4. I never qualified for Tysabri.

    Thanks,
    Jackie

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    1. This is a really good question. In the Tecfidera trials, patients receiving the drug experienced a decrease in lymphocytes (absolute) by approximately 30% during the first year of treatment before stabilizing. And, 6% of the treated group experienced drops to less than 0.5 K/ul (where the low end of normal for the testing lab used was 0.91 K/ul). Still, there was no increase in infection in the participants who experienced these drops in lymphocytes. General infections occurred in 60% of those who received the drug and 58% (not a significant difference) of those who received placebo. Serious infections occurred in 2% of both the placebo and the treatment group (no increase in the Tecfidera group). Take home message is that the drop in lymphocytes is not necessarily dangerous, but it can be, and we should all challenge our docs to support their recommendations with evidence from primary literature. It shouldn't be a guessing game, or they could keep us on meds that are hurting us or unnecessarily take us off meds that are helping. -Heather

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  16. Jackie, sorry, but I don't know the answer to your question. I do know that a rather severe drop in lymphocyte counts is required to qualify for "grade 3 lymphopenia", which is the point at which action must be taken. Actually, action should be taken before that point is reached, therefore the rationale behind getting blood tested every two months. I would think that as long as your starting lymphocyte count is within normal range you'd be qualified to take the drug, but I'd keep an especially close eye on your blood counts if you are already in the low normal range…

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  17. Hi ..... I have read all of the comments on Tecfidera and, as expected, I am nervous about starting this new drug. I am currently on Copaxone and my dr. has suggested Tecfidera since I really dislike taking a shot daily for now over 12 years. I do feel optimistic after reading your notes on the drug and knowing you would not take it yourself if it was not safe. Thanks so much for the info.

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    1. Copaxone was the first ms drug I was on. I didn't mind the injections, but didn't like when I passed out in the bathroom twice, bloody nose and high blood pressure and was rushed to the hospital. I was on other interferon drugs, various serious reactions. So far the reactions I have to Tecfidera are moderate, plus the other benefit is my psorarsis is going away! Woo hoo!
      Leg/feet cramps are getting better. If you do decide to go on Tecfidera, eat a full meal. Good luck!

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  18. Marc, I found your site by accident while doing research on Elan stock...which led me to Tecfidera which I had not even heard of...which immediately prompted me to find out more. And that brought me to you. I was diagnosed in 1988, long before CRAB treatments were available. Since then, I've tried Avonex, Copaxone and have been on Rebif now for four years. The new Rebidose injection system is a HUGE improvement over the Rebeject. Although my skin is longing for a pill to replace a shot, I will be waiting for a few years to see how things pan out. Great job on your site, and insight. Thank you. Terry in Denver

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  19. Thank you Marc for writing this, I've been driving myself crazy trying to sort through all the information about this drug. Im not crazy about it or the potential side effects but my Dr suggest it & thinks it may work for me. I've been off Tysabri about 4 months, since I tested positive for the jc virus and ofcourse nervous about any potential pml. However last week I had a terrible flare up and I'm desperate for a medicine that will fit me! Im scheduled to start techfidera next week, thank you soo much for all the work you've done to keep us informed!

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  20. Et bien moi, justement j attends avec hate le tecfidera, ras le bol des injesctions de rebif 44, qui me fou en l air, pratiquement à chaque injection. Cela fait 10 ans, pour les injections, j ai eu avonex, rebif 22 puis 44, mais pour moi c est penible. J ai décidé de mon plein gré de tout arreter, et du coup m ont proposé le tecfidera, donc j attends....pour une etude tolérance.

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  21. Bonjour,
    Et bien moi, j attends le tecfidera avec impatience, apres 10 ans d injections, avonex, ou rebif 22 puis 44, j ai décidé de tous arreter cela fait 15 jours, du coup m ont proposé le BG12...Je suis motivé, car les piqures, c est pas evident....

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  22. Thank you Marc - I am on the road to getting approved to start Tecfidera. It will be the 1st DMD I will try and am afraid to jump into taking pharmas but finally feel crappy enough to try. I found your blog in searching over a month ago about the drug and greatly appreciate your posts. I have had a big fat flare up of symptoms and weakness is creeping in and finally decided to take the dive. I had a feeling that the fear marketing about Tecfidera could be the competition. From what you wrote here, certainly sounds like it. Thank you for giving a clear account of things. (thank you thank you thank you!! )

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  23. Don't worry, Marc, Facebook makes my skin crawl too. Sometimes I temporarily deactivate my account to take a step back from it.

    An update on my Tecfidera experience.

    While a full week into the 240mg x2 phase, my flushing was still pretty mild and inconsistent. However, I started experiencing RIPPING ABDOMINAL PAIN that would last for hours about 6-8hrs after dosing. There would be no end result to this pain, no explosion. Just pain. That you really couldn't anything about without sleeping it off. Talked to my neuro, we cut back to 240mg x1. I also take zofran shortly after. Not sure if it really helps? But I do it just in case. Doc also mentioned that many patients think diet plays a part too. Eating heavy (carbs, dairy, sugar) makes it worse. I watch my diet for the most part, but I may have been having too much cheese. :-/

    I'd rather do this than needles/IV, but some people have decided Tecfidera is not for them because their skin issues/GI problems were severe. I'd say that it's worth a good try if you're totally done with needles.

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  24. I've been diagnosed with MS for 6 years and I've now been on Tecfidera for 3 weeks. It's really been life changing. I was originally in the CombiRx trial and taking Avonex and Copaxone in combination for two years and after experiencing mild liver issues, I was taken out of the trial and continued on with Copaxone for the last four. The injections were really becoming tiresome and when offered the chance to take oral medication, I jumped.

    My results were as follows:

    Week 1: 120 (half dose) in the P.M. My first dose I had an empty stomach and about two hours after taking it, I felt flush and when I saw myself in the mirror, I was lobster red. I freaked a bit but I knew that was a possible side effect. I then recalled my neurologist recommending I take aspirin with the medication. The next day I took one aspirin, ate a good dinner and then took the Tecfidera. No issues the rest of the week. Zero.

    Week 2: 240 (full dose) in the P.M. Second week I continued to eat a good meal and take an aspirin before taking the pill. I sometimes felt SLIGHT gas that I would classify as "good ammo for the Mrs." She may not have enjoyed it much, but it really didn't bother me. No other issues.

    Week 3: 240 dose P.M. and 120 dose A.M. Same old same old. Zero issues and I had completely stopped taking aspirin and worrying about having a full stomach. I occasionally get a bit of a flush feeling that can occur anywhere from 2-4 hours after taking the medication. It's mild... like a bit of tingling on my face.

    Week 4: 240 dose P.M. and 240 dose P.M. Starting tomorrow but I feel completely confident that I will have zero significant issues. What I feel now, if anything, is so mild that it would surprise me if I feel any symptoms whatsoever after another couple of weeks.

    If anyone took the time to read all of this, I hope it helps to ease fears. Maybe Tecfidera isn't for everyone, but if you doctor believes you are qualified, I would recommend giving it a shot. It may be the last "shot" you have to take. As said above, the majority of people commenting on the drug will speak of the negatives where as the people who are having zero issues are just going about their daily lives.

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    1. Thank you for your Techfidera Diary. It was very helpful. I wish I could get my neuro to try it, but he doesn't have any interest in using anything other than Rebif. I too am tired of the shots. But I am bedridden and afraid of getting diarrhea, which would be horrendous for me to deal with. It doesn't sound like you had any severe issues like that, but with my luck, I probably would.

      Again, thanks for your weekly diary.
      Debbie

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    2. Thank you Marc for creating this Forum. I was on Tysabri for about a year and a half before starting Tecfidera six weeks ago. The first week I experienced moderate discomfort, mostly like an allergic reaction and again when I doubled the dose after the first week, but since then (fingers crossed), it has been smooth sailing with almost no side effects at all. It seems like an amazing change from the monthly IVs of Tysabri and the side effects from those... People I interact with have noticed a change in my moods and cognitive, but I will reserve judgement until more time passes as I was very anxious to get off Tysabri, because of the PML risk, and want to be sure it is not a "Placebo effect". Though first impression is very favorable, while I still can not believe what the Drug Companies are charging for all of the DMD therapies :-(.

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    3. I am waiting for my first dose of Tecfidera. When reading the posts thus far everyone is mentioning taking aspirin, is it actually aspirin or will ibuprofen work as well?

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    4. Thank you! Now I know that I need to cut back on the carbs and sugar. That makes sense. Thanks so much for the diary information.

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  25. I just stumbled upon this blog while researching Tefcidera. THANKS! This was so helpful. I am a go for Tefcidera and am waiting for it to come in the mail. I tested positive for the virus so had to stop Tysabri a few years ago. I have done Rebif: lived through a year of flu symptoms until I couldn't take it anymore. Took Copaxone: ended up in hospital with heart attack symptoms. Started Tysabri: ended up virus positive. Did chemo 4 times a year for two years and broke through with a full-on exacerbation. Can't do steroids anymore because they gave me diabetes. I was so worried about the possibility of PML, but your blog has talked me off the ledge. I'm going to do it. Too many MS symptoms and just can't keep doing nothing. Thanks so much for the blog and I'll be coming back often. I hope everyone reading is as well as can be! Oh, and have you done the plasma transfer? My neuro thought it might benefit me if I have another exacerbation. Any info on that would be appreciated!

    Mia

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  26. Just want to thank everybody for contributing to this comments section. The input has been invaluable for patients seeking advice and information regarding Tecfidera .

    To the person who tried to leave a comment about her being afraid that Tecfidera will kill her, I'm very sorry but I accidentally deleted your comment. Rest assured, it would be a very rare case indeed for the drug to kill you. At worst, you may get some unpleasant side effects and have to stop taking the drug, but as long as you keep your white blood cell counts monitored through regular blood tests, you shouldn't run into any severe problems. Of course, being new, there are some unknowns, but given the experiences in Europe with Fumaderm , the odds of the drug killing you are quite low indeed .

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  27. I also stumbled upon this blog researhining the drug. I have been Tecfidra for about 5 days now & so far, I hate it. I have been extremely tired & depressed. All I want to do is cry............can't get my thought in order. Was looking to see if this is common..................I have just started, so beofre bothering my doctor, I wanted to see if this side effects would decrease.

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    1. I also had very bad side effects from tecfidera...........vomiting, diarrhea, severe stomach cramps, etc. I was looking very forward to this drug, but I am going back to Copaxone, I was sick for a week after the first dose of 240mg. twice a day. I hate the shots, but at least they don't make me sick!

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    2. I saw this post as I was looking around for info on "tiredness" and Tecfidear. I have been on just one 12o dose a day for a week, and I am so tired, I can barely function. More tire then usual & I am usually tired. The depression had subsided now that I only take the one pill a day, but the doc will increase this week, not looking forward to it ! I called BioGen the first time I expreienced this just to find out what was going on?

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  28. Almost six weeks now flushing has reduced considersbly, did have one episode of GI pain but i think that was my faultt for taking the tecfidera, ampyra on an empty stomach and then skipping breakfast altogether. One side note I will publish more on Monday. Possibly small cataract devloping in the right eye, and some small visual disturbances. Have never experienced optic neuritis snd nothing shows on my MRI. Have an ophthalmic exam monday keep my fingers crossed it is not drug related.

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    1. Good news on the ocular front. The problem was not with the Tecfidera, but a torn retina. My opthalmologist fixed on the spot with a laser. I was a little panicked that it was the MS or a side effect of the meds. Isn't it strange that news like that is considered good news:)

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    2. Have been on Avonex for 10 years and Then Copaxone for the last 7, starting Tecfidera...

      My post is about visual disturbances: My Neuro is convinced that my visual issues are not MS-related because they are transient and seem to affect both eyes at the same time. He called it a form of Migraine that does not present with headache. It responds to NSAIDS, and resting quietly in a dark room, so I tend to think he is spot on. Just wanted to share in case anyone else has similar issues.

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  29. Thank goodness for this blog. Hope of things subsiding! I was hit hard and frightfully unprepared. So what I am trying to say is.. if you have MS. Its a constant battle. The SE (side effects) are NOT to be taken lightly when they are prescribed. The paperwork nonchelauntly rambles the SE... when they should be caps with a note, to stay calm. The 800 number could learn some sensitivity training. Rather than the oh well they are "common". When your head is on fire and expelling embarrassing acid fart bombs that is usually not common to the user! Anyways :) Expect the worse, prepare, hope for the best. I wish I had come here sooner. Perhaps I would have prepared better v.s expecting the SE to the typical blah blah and not have flipped out as much. I'm not giving up despite the SE. Oh. My symptom cocktail is; full stomach, nsaid, bendryl, taken with cold liquid. You will find yours too. Hang in there if u find yourself not reacting very well. ERs... if its not A airway B breathing C circulation issues save yourself the comfort, time, money and away from the infectious people. I thought about it but I couldn't drive, 3 kids, and around here ERs are like happy hour social events to get Vicodin for pms. But you know you... MS is not fun. Going to an ER for a "common side effect (lame term) will be fruitless. Hang in there! Best of prep. :) anyone else having sudden vision problems after?

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  30. I started Tecfidera today and had severe flushing, first in the face and then most of the upper body. It felt like my skin was on fire -- like a bad sunburn -- with a lot of itching. The reaction started about one hour after taking the pill and resolved completely about 90 minutes later. It's my understanding that this typically only occurs during the first few days. I'm happy to be done with daily Copaxone injections.

    Steve



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  31. I randomly stumbled across your blog while searching for information on tecfidera. I am recently newly diagnosed. 24 when they gave me the possible dx and now 27 with a more confirmed dx. Deciding on a medicine was a lot to take in. Given my age, possible side effects, costs, etc I really struggled to decide what would be the best option for me. I also work in the health care industry. I like to think that for the most part our practitioners give us sound advice on what's "going to be best for us." But I am still left to wonder...Healthcare itself is now a business. Suddenly, being affected by something you know is a lifelong illness really makes you think a little harder. I became quite jaded as I realized they might even have better medicines to treat us...but they want our money. And if they find a cure and when, would they even tell us? I think people often forgot to remind those of their positive experiences when it comes to being sick. If anyone else is feeling the way I do for the most part (helpless, scared, disappointed, confused) I think its important to also remind others of the good things we encounter. I know everyone is going to be different. I chose tecfidera as my very first medicine I would be taking. I was armed with my aspirin (for flushing,) immodium (for stomach problems,) and a pretty negative attitude. I have not yet had one single symptom since starting this medicine. KNOCK ON WOOD. I feel totally normal going about my day to day life which is such a relief. I wish everyone luck with whatever course of treatment they choose. I now have your blog bookmarked and thanks for the well researched information you are putting out there.

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  32. Keep up the good work! I'm SPMS, diagnosed in '90 and have been on Betaseron, Avonex - did well for several years, tried Tysabri and Novantrone and got worse. Now just on steroids but would like to get off that treadmill! About to begin compounded dimethyl fumarate, I'll let you know how that goes. BTW, I dislike the Yankees as well, GO MARINERS (I know they suck) and GO BRAVES

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  33. MS in 2009-totally paralized. Went mostly vegetarian/fruit/fish--low inflammation foods. Also gluten-lactose free for most part.Been on Betaseron injections but never full doses on their time frame. Doing half doses every 3-5 days and ok except for hot/humid days. I can start Tecfidera if I want to as os last week Dr.appt. Anyone try 120mg dose and stay on it? Or 240 dose once a day or two days?? Sensitive/reactive people like me need to experiment with dosage. I got to 3/4 dose of Betaseron and sat staring out the window crying thinking of suicide(#1 side effect of Betaseron) Backed off dosage/frequency and improved. Can play trumpet again(have to sit) walk w/o cane usually but use a walker for longer exercise walks and doing pretty well,except hating shots(also did away with alcohol wipe before shot and have done much better) Not sure I want the new side effects of Tec but will trade for shots. Can anyone comment on overall improved MS symptoms being on Tec???Balance better? walking? relapses? or is it too soon? Most comments are on side effects. What is it doing/working for on actual disease symptoms of MS??? Thanks everyone.

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    1. I too am on a similar diet to you and have been for 2 years. I just started the Techfidera but the diet without any medication for 1 1/2 have helped my symptoms improve. I am on the line to underweight so I am going to talk to my doctor about playing with the dosage as I am just starting the full dose and already feel the nausea. I have had localized pain/burning on one side of my chest that doesn't go away so I have a cream for it.
      Stick with the diet along with whatever you do!

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    2. Don't understand why not many people are commenting on how their symptoms have greatly improved. Reading pretty much the opposite on other posts and WebMD. Decided not to take Tecfidera after approved and got 1st shipment after more reading and reading the tec data sheet that comes with it. Side effects and long term use discouraging, at best. The specialty pharmacy will not let you return medicine. Just got it, unopened,sealed but doesn't matter. NO RETURNS! I was surprised the supervisor knew very little about where Tec was mfg'ed or came from. We are supposed to trust them but they don't trust us!(never touched this box of medicine) Was surprised Tecfidera people didn't a whole lot about their product either. Don't you just love people who do not have MS giving the rote/textbook answers. Normal. Wanted to stay on low dose longer when I ordered, but turned down. I was quoted $10,000.00 a MONTH cost. And I have no input or 'say-so?' I would think I would be reading of people coming out of wheelchairs and walking for that price! If only it were true/possible! Decided to abort this program. Hope I don't read in a couple years, people's insides are eaten up by this acid. Forgot to mention that 6 days after I got the medicine I got a phone call saying I was approved for the free starter kit. I was told I didn't qualify 10 days earlier. Hope Biogen learns how the right hand knows what the left does real soon. Hope I'm wrong, but this seems like more 'hype' than help. Just my bad start experience.

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  34. Thanks for taking the time to do this post. I took myself off all MS meds which made my neuro very displeased with me. He sent me to an MS specialist who ordered the test for NMO which I should have had back in 2009. I am supposed to start this drug as soon as my CBC come back. I am small at 110# and typically don't tolerate drugs well. This article really helped me decide to give this drug a try.

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  35. I am curious if you or any of your blog followers have had positive results with a Nrf2 activator called Protandim. My purpose is not to sell it to anyone. My sister in law has been taking it since January

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  36. Just started week #3, I had the flushing from day 1 but started to get some stomach pain two days ago, thanks to those who replied of the same for easing my mind. Found this site researching the drug and was hooked after reading this line, "...I hold them (big pharma) in regard only slightly higher than the New York Yankees". That is just beautiful prose. Thanks for the site.
    Bill

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  37. I started Tectfidera 12 days ago. I had few side effects on the 120 mg dose, but when I started the 240 mg dose the abdominal pain and nausea became severe. I called my doctor and was started on Zofran. I actually stopped the medicine for 2 days because the abdominal pain was so bad. I took the 240 mg again tonight and within 3 hours the abdominal pain and nausea was severe again. I actually vomited and feel a little better now. I am not sure where to go from here. Will the symptoms ease over time?

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  38. thanks marc for this blog. i'm 56, m.s. (remitting and relapsing) diagnosed 2001 and took rebif-44 for 7 years before having massive full-body hives. it was an allergic reaction to rebif's new 2008 formula. knowing i couldn't take any other drug at the time since i was told i was allergic to interferon, and copaxone had one ingredient the same as rebif, i decided to start eating really healthy (lots of veggies, 3 fruits a day, no lactose, low gluten. for protein i eat chicken, turkey, fish, seafood, tofu, beans, not much beef. i'm too cheap to spend the extra money on organic anything. i love dark chocolate and eat a small amount every day. i quit eating cake and junk foods. no alcohol, very little wine or beer. i usually add turmeric to soups and stews since india has a very low incidence of m.s. and curry has a protective effect on the brain. i'm doing weight lifting everyday. also yoga. also daily: 30 reps of deep, slow breathing (breath in for 3 seconds and breathe out for 7) (which self-stimulates the vegas nerve?). i used to walk with 2 canes in 2001 to 2003. now i'm cane-free and i walk 3 km a day (i think the rebif helped a ton). my assistance dog passed away of old age recently and obviously won't be replaced. i'm going to ask for tecfidera after reading this blog for another few months. i still get relapses every year, but when i do, i attack them immediately with the gym. the m.s. nurse says "take it easy, pamper yourself when you have an attack" and over the past 12 years i've found that it's the opposite: when something's being attacked, fight back, stimulate the nerves with weights or yoga or just stretching, but get increased blood flow to the part of your body that's being attacked - asap! other best defence: try to stress less (the deep breathing is great for that) and absolutely try to be in denial of the disease as much as you possibly can. i'm doing great but it's still there and i'm praying i'll do great on tecfidera.

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  39. I have been on Tecidera now for 3 weeks. I had severe "flushing" I personally think they should change the name, because I was in itching burning felt like my skin was being ripped off h*ll! Although only nausea for GI problems. I also have Rheumatoid arthritis (thank goodness) because she takes my blood every month. I got my blood taken 2 weeks into the Tecifdera drug and my LY count dropped almost 60% from my last blood test. My neuro wanted me to wait out this weekend with the drug and get my blood tested today, I woke up feeling like I have the flu and had a massive fever last night that finally broke. I think I want to go back to Tysabri. During Tysabri I developed the RA but that is mostly under control now because I take Methotrexate, I don't think developing RA was the Tysabri's fault. Feeling like a Guinea pig :(

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  40. I posted not too long ago about just starting the tecfidera and not having any side effects at all. I just wanted to inform halfway through my third week I started to have some stomach pains (nothing severe.) I'm female and it felt a lot like cramping and who knows, I thought maybe I ate some bad food or something. The pains subsided within a day or two but my stomach still did not feel quite right (extremely bloated feeling.) Sometimes I flush and sometimes I don't. I tried taking it with food and without food. I don't see any rhyme or reason to the side effects, but throughout I was trying to remain positive because I really want this medicine to work for me. However, I do a great deal of reading and researching about the medicines online. Almost everything I read says if you can tough it out for a month or so, you will most likely see the side effects go away or become minimal. I have never had to take any of the injections since I am newly diagnosed but by the sounds of what people say and what I've read, those side effects are far less diserable compared to the upset stomach and nausea of the tecfidera. I really feel like these symptoms will subside once my body gets used to the medicine being in my system. I have two alarms set on my phone for 9AM and 9PM to remember to take it twice a day. So far this is working out for me. I wish everyone good luck in their attempts to find a medicine that works for them.

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  41. Hey Marc,

    My brother is totally incapacitated in a nursing home. Do you know if Tecidera has helped anyone in this condition.

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    1. Hi Roger, so very sorry to hear about your brother's condition. Tecfidera has only been on the market for a short time, and the trials involved patients with relapsing remitting disease who were ambulatory. Therefore, there's no way to know what the effect of the drug might be on patients with more advanced, progressive disease. Some of Tecfidera's mechanisms of action appears to be promising in terms of neuroprotection, but nothing concrete in that regard has been established.

      Having said all of that, patients like your brother who have suffered serious damage to their central nervous systems likely can't expect to see improvement from any of the MS drugs currently on the market, or even, to the best of my knowledge, from the experimental drugs currently in the pipeline. The best that could be expected would be a halt in the progression of the disease, but for nervous system cells to recover and repair some form of stem cell therapy will undoubtedly be necessary. Though stem cell research is advancing, we are still nowhere near the point that serious damage to the nervous system can be corrected. Try not to give up hope, though, I know that researchers are hard at work, and perhaps someday there will be options for patients like your brother.

      MS sucks.

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  42. Is there anyone here who has MS and Type 1 diabetes? I've read elsewhere that Tecfidera lowers your blood sugar and I need to know how much (to avoid going into insulin shock!). I plan to start on Tecfidera in September, after an upcoming family vacation and getting our daughter off to college.

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  43. I was diagnosed with MS in 2007, since then I have been on Rebif, Tysabri and Copaxone. I began Tecfidera one week ago. Though I was concerned about the side affects, our prayer was that we might be able to also "see" that the medication was helping my MS. For me there have been no side affect, I've take heed to the warning of having food on my stomach when taking the medication. Since beginning last Sat., the first night I was able to raise my limp right leg from the side of the bed into the bed without any assistance. However this has not been consistent, but it also has not happened in over a year. The following Wed. I was able to reach in my back pocket and pull my wallet out, also more than a year happening. Today was my first full dose of tecfidera. What we have been able to "see" today is that on my full dosage I was able to stand from a seated position without using my hands or arms to rise. Don't know what the future holds but praise God for right now and hope!

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    1. Update from July 6 entry going into week 4. no nausea, no flushing, but little itching on right wrist,just rubbed it Neosporin and now no problem. walking and balancing continues to improve. daily exercising now more consistent because energy level is better. Had lost use of right hand but now able to extend it. I hope that others begin to see a difference and that your side effects become nonexistent.

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  44. Marc,
    I was wondering if you have begun your treatment of tecfidera yet, and if so, what your response has been? I was diagnosed with MS back in September '08 (3 months after getting married). It's been an interesting experience thus far. Way back in '99 (when I was 18), I came down with Optic Neuritis in my right eye. This took my vision completely for roughly a year, then one day I began seeing shadows again, which was quite a relief. Doctors told me, that while I was still too young to diagnose properly, there is a "chance" that this might be a prerequisite of MS.

    Over the years I've had various numbness, vertigo and more recently extreme joint pain. I've also suffered from a 2 month bout of bell's palsy. That cured itself in April of this year, but I still have various slurred words as a result.

    That brings us to now. Over the years I've taken Copaxone, Avonex and just recently my doctor prescribed me Tecfidera. I'm looking forward to the new medication and hope that it can do something to lessen/eliminate my daily joint pain. Time will tell if it works out, and I hope all is well with your own affliction. This blog is a very informative and a great way to realize that I'm not alone with the disease and that some people definitely have it worse off. I've taken a lot of what you write to heart. I realize that there is a 25% chance that I will lose the ability to walk as well, so I've been going out of my way to make sure I'm very active with my daughter (now 18 months), because things could change any time.

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  45. Hi Jonathan, glad you're finding value in my blog, but sorry to hear about your diagnosis. I am not currently on Tecfidera, as my neuro has me trying some "different" approaches. My disease is extremely atypical, so we are not sure if Tecfidera is the way to go.

    Hoping that the drug works out well for you, I am starting to get notes from folks who appear to be seen benefit from using Tecfidera.

    As for your chances of losing the ability to walk, many patients live with MS for decades and still remain mobile. I don't know if you have relapsing remitting or progressive disease, but either way, there have been some promising developments in the world of MS research, and although things are not progressing as quickly as we would like, there has been some encouraging news, particularly for those suffering from RRMS. Progressive disease continues to be confounding, but at least researchers are finally starting to turn their attention to it.

    As for maximizing the time spent with your young daughter, I think that's a good idea regardless of your health. One thing dealing with disease teaches us is that each day is precious, and that old admonition to "seize the day" is just about the best advice anybody has ever given…

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  46. I was diagnosed with MS in March of this year. I am currently taking Tecfidera. This is the only meidication I've taken. I'm on my 3rd week. I have had mild side effects. Nothing horrible. Some stomach pain and nausia, some flushing, but tolarible. I have noticed for about the last week or so I've been really tired, more like exhausted. I was just wondering if anyone else on Tecfidera is having this same issue. Since I'm newly diagnosed I wasn't sure if this was a side effect of the medication or if I'm having a flare. If it's a flare the medication is helping because the last time I had a flare I was so weak and i had to have iv steriods. By the way, my name is Tracey. I find this blog very informative and helpful.

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  47. Hi Marc, I love your blog. I was diagnosed with rrms in 2004, but have had symptoms since 1998. I have not taken any CRAB'S. Tecfidera is going to be my first attempt. I am in the process of being approved by my insurance. My hope is that Tecfidera will slow down any progression. Thank you for the information about Tecfidera. I will post my experience with this new drug once I start.

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  48. Hi. This is Tracey again. I posted yesterday about tecfidera and if anyone had any side effects of extreme exhaustion. I talked to my neuro yesterday and he didn't think it was caused by the medication. He gave me a prescription for Provigil (Modafinil). He said that studies have shown that it is effective in treating the extreme fatigue in MS patients. I got it filled but haven't started it yet. I'm kindof affraid of it after reading the side effects it can cause. Has anyone taken this medication? If so, how were the side effects?

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    Replies
    1. Tracey, I know a bunch of people on Provigil, and most of them find it helpful. I tried it and didn't like its effects, it made me very "antsy" and uncomfortable. Don't be afraid to give it a try, though, if you don't like the way it makes you feel, just stop taking it. MS fatigue sucks, so it's definitely worth a shot.

      Delete
  49. Thanks Marc. I will give it a try.

    Tracey

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  50. I found this blog like many have...researching while waiting to start Tecfidera. I took my first pill about an hour ago and crossing my fingers! I was diagnosed in 2006 and have been on Copaxone, Avonex, Rebif, Tysabri and now Tecfidera. Needless to say with all the needles in my past I will be excited if this works well for me! One question I do have for folks. I was diagnosed with Celiacs in November 2012, and the thought of GI consequences of Tecfidera causing more problems in that area give me pause. Does anyone have experience with Celiacs and Tec?

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  51. Good Morning. Marc, I just tried my first Provigil this morning before coming to work. So far so good! :) It's definatly helping with my fatigue. I only have to take 1/2 pill so it's 100 mg. Hopefully this awake, alert feeling will last all day. I was really nervous to try it, but thanks to your response to my comment, I decided to try it. Fingers crossed that it keeps working for me. Thanks again Marc!

    Tracey

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  52. I'm 56 years old and was diagnosed with MS 32 years ago. I began taking Tecfidera 3 weeks ago. Since increasing the dose in the 2nd week, I feel as though I've been poisoning myself with this drug. The side effects have been extreme flushing (feeling like I was set on fire), extreme fatigue and extreme nausea. I came home from work last evening too nauseous to eat dinner, skipped the evening dose and slept for 12 hours. Enough!! I'm not going to continue with Tecfidera. Best of luck to others who've enjoyed good results.

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    1. Did you find the symptoms every time you take it? I too had flushing, abeit on the third full dose, and knock wood, haven't had anything since.

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  53. I am on my third week of tecfidera and started experiencing extreme nausea. I'm not throwing up but even though I hate to do that I've been wishing I would. Also last night I started running a fever of 100.5, I'm extremely tired and to tell the truth getting depressed by all of this. Anyone else experience fever and how long can the nausea last. I really don't want to go back to needles but I can't take this much longer.

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  54. Tecfidera 1st dose last night dizzy, confused, flushed. Went away in 2 hrs I think it was anxiety related. Took 1 Advil Liquid gel. 2nd dose this morning again dizzy, flushed went away in an hour. Again I think it was anxiety related. Took 1 Advil Liquid gel and Prilosec just in case but stomach is fine. Both doses on a full stomach. Hopefully it stays this way but somehow I think the worse is yet to come.

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  55. I love your blog, I will be a regular now that I found you. Great article on Tecfedera and PML. I was wondering if you had any come across any statistics or general information regarding Fumaderm or Tecfedera connections to cancer. There is a reference in the Tecfedera information that indicates rats/mice given extremely high doses of the drug developed cancer. Why the big pharma companies consistently dose rats and mice with MEGA doses as compared to their weight continues to astound me. Meaning, when I read that statement I am initially inclined to disregard it. HOWEVER, I am what is called a DES daughter. Translation, my mom took a synthetic estrogen when she was pregnant with me that was found to cause everything from cancer to fertility issues with the children. In addition, there have even been studies that suggest increased incidents of autoimmune diseases in the adult children. After burying three premature babies AND being diagnosed with MS, I'm even more cautious. Sufficed to say, it is a bit more difficult for me to 'disregard' the information regarding possible connections to cancer. I am thinking about moving from Copaxone to Tecfedera, but tend to be extremely cautious about anything I take. Honestly, until my diagnosis, I was one of those naturopathic, organic people (still am, with the exception of the Copaxone). I am even a bit Leary of taking an aspirin with every dose of Tecfedera. Any information that you may have come across would be helpful regarding the cancer connection.

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    1. Haven't come across any info in regards to Tecfidera and cancer. I generally take with a grain of salt any studies done in mice, particularly since the mouse model of MS is HORRIBLE. And, as you say, the doses they give the mice are tremendous, and I suspect even benign substances given in such doses would cause all kinds of problems.

      I certainly understand your caution, though, given your genetic history. Tecfidera does have immunosuppressive properties, which hypothetically could reduce the body's ability to fight cancers. I would emphasize the word "hypothetically", though. Certainly something for you to discuss with your neuro…

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  56. I have taken pills 3-10 of 120 mg Tecfidera. With pill 3/4 was feeling alittle bit dizzy. Then I didn't get dizzy again till a few days later around pill 7. Still taking Advil Liquid Gels and Prilosec as a preventive. No flushing, no diarrhea seems to have the opposite effect for me (constipation). Was nausea also with pill 7 lasted a few hours took a lot of peppermint hard candies. But I think it was having something bad for lunch. 1 of my kids shared the lunch with me and he did not feel well either. Have not had anymore nausea since. Feeling pretty well overall! Will start the 240 mg dose soon hopefully it will go just as smooth. But like I said I'm still waiting for the worst to happen.

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  57. I am on week 4 of Tecfidera. Up to this point it has been wonderful. I have had some slight flushing which has lasted for only about 5 minutes. 3 days ago however, I got a severe bought of diarrhea and nausea that has limited my ability to much more than stay around the house. My neuro doc is prescribing me something to help with the nausea. I'm hoping it goes away because I really don't want to go back to taking the Copax injections again. Fingers crossed!

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  58. Oh pill 12 of 120 mg gave me a lot of trouble today. Weak, confused, feel like I had a fever, sore throat, ear infection. Very very agitated and nasty towards everybody today. Everyone and everything is bothering me! Dizziness is so extreme today I can't even walk straight. Have palpitations all day! Could be female related but somehow I don't think so. This feels different I think my worst is here. 1 - 120 mg tonight and 1 - 120 mg tomorrow morning. Tomorrow night will be my 1st - 240 mg. At this point I'm praying it's something else not related to the Tecfidera.

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  59. Dizziness in pills 11/12 still pretty bad. Disappeared I thought at one point the dizziness. Got in the car feeling OK to drive but got dizzy halfway to my destination. Drank some water told the people I may even pass out. Scary feeling especially when you have 1 of your children with you. I ended up taking 1/2 a Valium. Dizziness was about 90% gone with that. I was fine to drive back home 45 mins later. All this time feeling nausea also. Took my Advil as a preventive tonight and took my 1st dose of 240 mg. I'm not looking for this feeling to get any worse but I think it will.

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  60. Just started taking Tecfidera this week (had flushing and itching the first two days, which has since subsided). But then two days ago I saw the news about the 59 year old woman who died of pneumonia after taking Tecfidera for 5 weeks. I assume this has to do with the lowered white blood cell count, and apparently the patient had chronic bronchitis. But it does make one a bit nervous... Thoughts on this new case?

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  61. Le sigh... I am a 41 year old female diagnosed in 2011 and Tecfidera did not work for me. I seriously flushed (like I was sunburned from the inside out) after dose 1, and then just a little after doses 2-4. I ate before each dose which I think helped the gastrointestinal reaction because I had no GI issues at all. All ready to sing the praises of Tecfidera, I was! After dose six, I began to break out in hives from head to toe despite my complete insistence that it was NOT happening. In the hope/denial that it was not the meds, I took two more doses, so the hives got much more more angry. I have been off the meds for 1.5 weeks, and while my hives are slow to calm, they are calming...

    Peace,
    Cristina

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  62. I was diagnosed in 2012 and have only tried Copaxone. I had pretty much all of the side effects so I stopped taking it and instead tried organic treatments like diet, yoga, acupuncture, etc. My new MRI shows that I had three enhanced lesions so I guess none of that worked. I told my neurologist that I'd think about taking meds if my MRI came back worse and since it did, now I feel like I should at least try tecfidera. The thing is that I don't want to. I'm just as scared of the medicine than I am of the disease. I'm considering seeking out other homeopathic doctors but am I playing with fire here? Thoughts about what I should do? What would YOU do?

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    1. Diana, your story could be my story. I was bound and determined that diet, acupuncture, meditation and vitamin B and vitamin D were the answer, but after a new MRI showed an increase in Lesions this last time made me question everything. I just started Tecfidera yesterday. I am nervous but curious. I will try to update as things happen or hopefully don't happen! :)

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    2. Hey. Sorry about your lesions. :( Please let me know how you are feeling! I hope there aren't too many shitty side effects.

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    3. Hi Diana, after starting the Tecfidera on July 26th, I thought, after experiencing some intense flushing only twice that maybe this was going to be my miracle drug. Today is August 6th and I have been extremely exhausted for about 3 days now, which I NEVER have had with the MS, joint pain, and 3 really throbbing headaches...... I am thinking about calling my neuro today. I know she is going to say "give it a chance" but I have played that game before and I usually listen to my body. I am not sure what to do at this point. :(

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  63. First full day of 240 mg Tecfidera. I experienced dizziness & sweating last night. I don't know why I could not sleep last night. I think it was due to nerves because I thought something was going to happen to me. This morning had weakness and was extremely tired. I could not get my son off to school. I ended up going back to bed. When I woke up later I felt better was fine the rest of the day. Alittle bit of dizziness tonight but it passed quickly. Hopefully tonight will be better!

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  64. Day 2 felt fine the whole day! Just at nighttime I took my medicine without eating. I think I still need to eat with the medicine cause I got dizzy. But it went away right after I ate something. Still think the worst is yet to come I don't know why I feel that way. Let's see what Day 3 brings!

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  65. I was diagnosed in 2009 at 40 years of age, after developing a severe allergic reaction to Copaxone (which I took for nearly 1 year) and then experiencing severe flu like symptoms from Avonex I did not take any drugs for almost 2 years. After a recent MRI showed a sudden increase in active brain lesions my Neurologist recommended Tecfidera. It took me 4 months to finally get approval from state Medicaid but they finally approved. I started my first dose yesterday, I was pretty nervous considering The only thing I have taken in almost 2 years is Vitamin D and Vitamin B12 supplements. I took my first dose with some toast and some tea about 3 hours after, my ear felt HOT when I went to the mirror I was staring at a very red lobster it spread from top to bottom and was a little itchy and warm but after an hour and 30 minutes was gone. The 2nd pill i took after a very full meal and I did not experience any side effects. I took my third pill about 1 hour ago so we will see, but nothing yet. I am hoping that this is the one. I have another MRI scheduled for the end of October and I cannot wait to see the data..... Thanks for this site, I just joined and know I will be here often to see what others have to say.

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    1. update: It is August 4th, and I started the higher dosage on Friday, I again experienced a very bad flushing reaction but it only happened at the first dosage and now the first higher dosage. That hasn't happened again. I seem to be experiencing a acid reflux type thing with the higher dosage. I have never had this before but it happens after I eat. I also have had an on and off pounding headache. Headaches are not mentioned in the reported side effects, so not sure if it is from the meds? I also have been teary...... I am a very happy person and not for sure what is going on. My fiance is keeping a very close eye on me and says if it doesn't improve we will see what our options are. I thought this medicine was going to be my answer.......I am not so sure now.

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    2. HI, I have only been on Tech. for 5 days, before that on Copaxone for 10 years. I have the destruction of cells that comes along with Copaxone and swelling and redness at injection sites but no other side effects. So thought I would try Tech. but so far on the 120mg dose 2x's daily I have had extreme fatigue and depressive mood (lots of crying). I didn't take the med. itthis am and don't think I will continue. Talked with active source they said fatigue was not a typical side effect, but hey I often don't react to med's typically. . So though I get the idea that for many the symptoms can reduce, don't think I can take it.

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  66. Day 3 was alittle bit rough! Was dizzy most of the day and nausea. My lungs felt as if I had drank Clorox (or some type of poison). Took Zantac 1 1/2 hours before my Tecfidera dose. I still think something's going to happen. Today I actually felt that I was truly burning holes inside my body. Let's see what tomorrow brings!

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  67. Day 4 went pretty well! Was dizzy for about an hour this afternoon but it went away pretty quickly. I find myself easily tired on this med. It doesn't help when your kid won't sleep till 3 am two nights in a row. The only problems I've been experiencing is I feel like I have an ear infection and sore throat. I guess it could be unrelated to the meds not sure need to see an ENT. Also I find I cannot each 3 big meals a day. They need to be smaller portions or I get that nausea feeling. Day 5 report tomorrow!

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  68. I was diagnosed last week with MS. Tomorrow, my doc and I decide what drug I will go on. I am JC negative. Earlier, you said that it's basically a no-brainer to go on Tysabri if you are JC negative. Do you mind letting me know why? I'm very concerned about the PML risk and the liver problems that could accompany Tysabri. I'll continue to search on your blog to see if I can find past info that you have posted on Tysabri.

    I thought that it would make sense to try a safer drug (like Copaxone or Tecfidera) before trying a risky drug like Tysabri.

    Thank you! Excellent blog. I will return often.
    Bonnie

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    Replies
    1. The incidence of PML in Tysabri patients who are JC negative is quite small, I think the last numbers I saw were something on the order of 1 in 10,000. This is quite negligible, especially in comparison with the odds for patients who are JC positive, which, depending on the circumstances, can actually be less than 1 in 100. Tysabri is the most effective MS drug currently available, and about one third of patients on it show no disease activity whatsoever.

      Although I'm generally not a huge fan of the pharmaceutical companies, mostly because they aim to treat rather than to cure, I do recognize that their products have increased the quality of life for MS patients, in some cases dramatically.

      Here's a link to a slideshow with an in-depth analysis of the latest Tysabri statistics:

      http://www.slideshare.net/gavingiovannoni/natalizuman

      Of course, the decision as to which drug to take is a serious one, and should be made in close consultation with your doctor. The CRAB drugs have proven to be very safe, but their effectiveness doesn't come close to that of Tysabri or even Tecfidera (though Tecfidera is a new drug, and we can't be sure of how ultimately successful it will be). It basically comes down to a risk/reward scenario, and each patient must decide for themselves their comfort levels.I know how difficult and confusing this decision can be, especially for a newly diagnosed patient.

      Sorry to hear about your diagnosis, and best of luck moving forward.

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  69. A little something about my experience with Tecfidera. I have been taking Tecfidera on a full stomach everyday at the same time for the past three days. Day one was the only time I experienced flushing and hives. The episodes only lasted 20 min. I take my homeopathic digestion drops 3 times a day. I take LDN at bedtime. I feel the same just a bit warmer, but then again I do live in the desert. I hope my experience continues to be a positive one. Best wishes to all.

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  70. I just got my first shipment of Tecfidera today. Will be starting it in the morning. I hope all goes well. I am 36 year old male who has been dx’d since 1999. I was having double vision and went to the Dr.’s. He told me I possibly had a tumor on my brain. I was supposed to get married in two month’s, So my future wife and I were very worried. A month and a few tests later… the Dr. said Don’t worry, Its only MS.

    He started me on Copaxone. Everytime I would give myself the shot, I would have a 50/50 chance of having a adverse reaction and after passing out and a pleasant unconscious trip to the hospital, he took me off the med and put me on Avonex. Which was alright, but at the time I was working, so I would take it on Friday night and pretty much stay in bed until I had to go to work on Monday.

    So the Nuero. Started me on Tysabri. I loved the stuff and was on it for over 5 years. Then the JC virus was being connected to PML. And wouldn’t you know it, I was positive. So my Nuero yanked me off Tysabri and tried me on Gilenya. This was the worst yet. I got canker sores in my mouth so bad I couldn’t eat or even drink. After losing 45 pounds, He took me off of the pills.

    So I went a year untreated and It was OK at first, But then I started relapsing. Nuero said I am running out of options but I needed to be on something. Tecfidera will now be my drug of choice. My sister turned me on to your blog and I will keep you updated on my journey. Thanks, Sam

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  71. Hi all, I was diagnosed about a year ago now and have tried different treatments. My neuro started me on the Tecfidera in May. At first the flushing and rash was horrid. Now I still get the flushing, but it is not as bad. How long will it last? Has anyone still got the side affects after this long?

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  72. Ok I'm out of the hospital glad to be alive and off the Tecfidera. First of all it was very difficult being in the hospital especially with 2 kids. One a sports fanatic and one autistic and also diabetic. On Monday woke up did not feel well at all. Called my parents I told them please don't go anywhere. Both my kids were sleeping yelled for both to get up b/c I thought I was going to collapse. My father comes over and I told him I have severe abdominal pain I just want to throw up. My mother comes over now to watch the kids we then leave for the hospital. Now I throw up have difficulty even making it downstairs. Get to the hospital need a wheelchair to get in can't even walk. They take me right in told them about the Tecfidera and I feel like my whole insides are burning and I'm going to throw up. See the doctor he starts an IV and Zofran stay there for 4 hrs they release me. I go home I'm fine for 4 hrs I even went out. At 3 pm the pain comes back with a greater intensity. Suffer excruciating pain till 4:20 parents call an ambulance. Can't even speak just want to curl up and die at this point ambulance is delayed. My husband comes home and is like what's going on. We live next door to my parents. They take me back to the hospital. Hospital is very busy at this point and I wait 2 hrs before I'm even seen. Finally doctor comes in I told him what I told the other doctor before. Gives me another IV with 2 Zofrans and keeps checking on me. Of course all kinds of blood work is being ordered on both visits. This doctor orders a CT scan and X ray. CT scan and X ray are negative! I'm still there at 3 am in the morning. Doctor says you don't feel any better I say no. Now I'm admitted! I'll continue my story later children are hungry.

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  73. Sam's journey:

    Well... My first day is over and it wasn't too bad. I had a little flushing, itching, some stomach discomfort and balance issues (I think) Its hard to say since I didn't have any balance in first place. I don't know, it just seemed my balance was a little worse. But all in all... Nothing so horrible to make this treatment seem unbearable.Emoji

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  74. I'm back! After being left in the ER for a day and a half I finally get a room. I see every doctor from infectious disease, gastro, neuro, regular. Still can't eat anything the nausea and stomach pain come and go. Through all this I'm running a 102-103 fever. They all agree an Endoscopy needs to be done. Neuro at this point stops the Tecfidera. Yeah! The next day I go for the Endoscopy. He tells me you have inflammation and bleeding from the top of your throat all the way to your duodenum. Inside the duodenum is where most of the inflammation is. It's like you burned the whole insides of your body. I did see in a web page somewhere that Tecfidera was good for cleaning furniture. That's how strong it is! He said he cauterized all the bleeding and took a sample. He put me on a restricted diet no spicy, stomach upsetting foods for 2 weeks. Prilosec for the next 2 weeks also. I ask him if this will go back to normal as I had no stomach problems before this he said I hope so. He thinks it will be a long time before that happens but still looks uncertain in his answer. As far as him taking the sample that concerns me. I'm told I can go home that day but then told I have to stay cause of the fever. So I end up staying and the fever went away. Gastro thinks the fever was there b/c of all the bleeding but since it was cauterized that's why the fever left. I finally go home! I have been out of the hospital for 3 days and my stomach still hurts. Much better than what it was but I think it's going to take a long time to heal. I will make the gastro appt in 2 weeks to see what he says. Wish me luck!

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  75. I'm finishing up my third week of Tecfidera. The first week (120mg) I experienced some gas. The second week (240mg) I felt a little bloated, no gas. The third week I started to experience mild abdominal discomfort that has turned into diarrhea. I also have developed a cold. I am wondering if the cold is a result of the Tecfidera. I usually don't contract colds. Can the effect on the lymphocyte count happen this quickly?

    I am encouraged to read side effects have gone away after a month for some people. Since my side effects seem to be getting progressively worse, I am wondering how long they will last. I sure hope they dissipate sooner than later. Can someone who has been on the drug for more than a couple of months please comment?

    By the way, I have experienced a few isolated instances of itching. I didn't initially think it was due to the drug. After reading this blog and another online forum, I realize it may be. I had attributed to the MS because I had an exacerbation once that included itching.

    By the way, I am participating in a post-marketing study of Tecfidera. Biogen Idec is interested in learning more about the GI side effects and how people are treating them. The study is limited to GI side effects, not the flushing, itching, or weakened immune system. The good news is that there will be more information available about the GI side effects (or info added to the literature advising patients to invest in lots of Imodium, hahaha). The bad news is that the study doesn't address the whole person and ALL the side effects of the drug. As far as my experience with MS drugs goes, the drug companies are all about the marketing. I can't blame them given the high cost of entrance into the market. As a person with MS, though, I have to be discerning about the information provided.

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  76. Thanks everybody for continuing to relate your Tecfidera experiences. At this point, since this post is so old, all comments go through a "moderator" process, meaning that I'm alerted to them by email so that I can weed out any spam messages that might be trying to wheedle their way in.

    Unfortunately, it seems that some legitimate messages that I give the okay to never make it onto this comments section. Not sure why, and it's making me a little bonkers. So if you've tried to leave a comment and it hasn't appeared, please don't hold it against me, it's some kind of technical glitch…

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  77. Great post!

    One comment:

    I think it is that Fumaderm has seen four cases of PML in approximately 180,000 YEARS of drug exposure, not hours. (http://www.nejm.org/doi/full/10.1056/NEJMc1300283)

    But the comparison is likely apt as the Tysabri exposure may be years instead of hours as well.

    Thanks for doing what you do.

    David

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  78. Like was said earlier, people who do fine on medicine don't usually share that with anyone. Well, I am three weeks on Tecfidera and the worst I have seen is flushing after taking the first pill that lasted for 20 minutes. I found out in 2004 that I had MS and have been taking Avonex since then. Got tired of taking the shot every week so I decided to try Tecfidera. I would recommend anyone that hates taking the shots to give it a try. I really love this drug. Thanks Biogen!!

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    1. Now I'm on week 9 and still no major issues. I get the flushing a few hours after taking the medication. It isn't every time and only when I don't take it with food. I still love this drug and it is much better than any of the shots. 1) It is cheaper than the shots, though still very expensive. 2) It works better at helping with the MS than the shots. 3) I don't have to worry about the weekly injection. Again thanks Biogen!!

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    2. OK I'm back and now I have been on Tecfidera for almost seven months. I still get the flushing every once in a while. Never have had any GI problems with the medicine and I take it with or without food. I also notice a bit of a runny nose at times. I am still very happy with this drug.

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  79. I'm a 45 yr old male diagnosed with RR MS twelve years ago. I recently switched from Gilenya to Tecfidera. So far so good. Minor flushing problems at full dose which improved by taking it with a meal. No stomach issues although I've never had problems tolerating medication in that regard. I'm noticing the immuno suppressive effects as with Gilenya. Increase in minor ear infections, etc. No real evidence to support this but I feel Tefidera is working better for me. Less dizziness and just a gut feeling it is and will be more effective for me. Best of luck to those suffering from GI issues. Hopefully they'll decrease in severity with time.

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  80. Dx MS 2002. I have a new Doctor and she has me on Tecfidera. I am in the second month and my side effects have varied ...gotten better then worse etc. I had severe and I do mean severe stomach pain and cramping. This happened with or without food and no matter what kind of foods. Mind you as I am on a walker now and very weak most days, I have a problem with constipation so this wasn't helping matters much. I decided to stay on the meds in hopes the side effects would gradually reduce as I had read on several informative sites regarding the subject. I need to note I am on a medication for acid reflux as well and it was a problem before the Tecfidera (Omeprazole). The stomach pains seem to finally have lessened and are only bothersome once in a while like every other week or so. Other side effects that I didn't really find out about until I started the full on dose and I have read of some other people experiencing include changes in vision (have had neuritis before so not sure if this inflamed it or not) and this occurred pretty much right after I began the low dose, pressure head aches, HAIR LOSS and as a woman I know it's vain but it's devastating to me after suffering so many losses to MS, my insomnia seems worse, I feel weaker than normal a lot of times but it is just so hard to tell with MS if it's the disease or the meds. My depression is extreme and I cry more than not anymore especially when I am seeing my hair come out in larger amounts, ringing in the ears with some sharp pain, and some dizziness. I really want this medicine to work for me and other MS patients who have had their share of the needles. I see my doctor next month and I have no idea what I will do even if the blood tests come back within normal range. I sort of feel like a Science project with this medicine being so new and all. Side Note that is probably very important: My legs seem to be a bit stronger and even my husband noticed this. So there is the bad with a tiny hint of good in my experiences so far with Tecfidera. I will update after my next DR appt in Sept. Thanks for reading and sharing. God Bless.

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  81. Day 4 on starter dose of tecfidera, mild flushing day one and no side effects until today, mild
    abdominal discomfort and lots of trips to the bathroom, nothing intolerable.

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    1. Hey!

      I'm 18 and I've been on Tecfidera since early June and I still deal with the facial flushing but its not major. One thing I found to help with the side effects is to eat something before taking the pill. The trips to the bathroom should decrease as well. If eating before you take your pill helps it should seem like there's no symptoms at all.
      -Gabby

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  82. Any studies if you were to stop taking tecfidera completely?

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  83. Lots of information one way or the other. I was told I have MS 2 months ago. I am in denial somewhat, but I have agreed to take Tecfidera. It arrived a week ago and there it sits on my desk. I have gathered up enough nerve I think to use it, and have scheduled myself to start Saturday the 14th. The only symptom I have is blurry vision in my right eye and obvious symptom on my MRI. I will let you know what happens next week.

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  84. Hello.... Given that Biogen admitted that during one study looking into the effectiveness of Tecfidera , (that they paid for) that when compared to a well known herbal based supplement that the other product actually did a better job,i was wondering if any folks were thinking about changing it up and maybe going a different route with a product with a similar mode of action and perhaps easier on the GI issues. I hope that one day folks around the world come to terms with the business end of these drug companies...and how its alright to charge over $50,000 for a drug that they didn't even invent the active ingredient for,which has been reported to cost less than a few hundred bucks per year. And the annual average salary in the states is how much? Words like extortion and even terrorism come to mind. Hopefully someone makes a movie and donates some cash to the cause.

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    1. Though I'm not often in the habit of jumping to the defense of pharmaceutical companies, in this case I feel like I must clarify the above comment. Biogen did commission a study to compare Tecfidera's Nrf2 activation properties with several other compounds, and one of these compounds, a natural supplement called Protandim, was more efficacious, at least in a test tube.

      Initially, many people, including myself, took this to mean that Protandim would be just as effective in combating the symptoms of MS as Tecfidera, but that was a mistaken assumption. Tecfidera's mechanism of action is much more complex than just Nrf2 activation. In fact, it appears that the drugs primary mechanism of action is immunosuppression, as it reduces lymphocyte counts in those taking it. It also has other antioxidant and anti-inflammatory properties. It may also be neuroprotective.

      As far as Nrf2 activation goes, Protandim was shown to be more effective than Tecfidera, but as I said, this was only in a test tube. Whether or not the same holds true in the human central nervous system is another story entirely, as we don't know if Protandim crosses the blood brain barrier. Even if it does, Protandim does not have the same immunosuppressive and anti-inflammatory properties as Tecfidera.

      Not saying that Tecfidera is a perfect drug, but one would be mistaken to expect Protandim to mimic the beneficial effects of Tecfidera when given to MS patients. It sucks that so many patients are having a problem with the side effects of Tecfidera, but hopefully the drug will prove effective in the long term, and strategies for minimizing the side effects will be developed.

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    2. And, yes, the price of these drugs is obscenely outrageous. But that's the medical industrial complex for you…

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  85. Thank you for your blog! I was diagnosed with MS 11 years ago, and apart from the initial symptoms that led to diagnosis, have not had any symptoms. Instead, my main MS-related symptoms were always related to the drugs I was taking: flu-like symptoms, the "MS hug" (BTW - what an adorably patronizing way for a pharmaceutical company to make a terrifying temporary heart-attack feeling occurrence seem cute), anxiety, depression.

    When I was wondering if I should take Tecfidera, I looked all over to find out what people's actual experiences were with the drug. There's always a disconnect for me in reading the experiences listed in the Full Prescribing Information, and the actual narratives of people, as in this blog.

    I think it's important for people considering the switch to know 2 things: 1) the experiences you see reported online are typically going to be those at either end of the spectrum-- really positive, and really negative, with far fewer in the middle; and 2) the full prescribing information will give you how many PEOPLE had a particular side effect (ex: XX% of people had flushing), but won't tell you how frequently each of those people had the side effect (ex: one person flushed once, another flushed every day).

    I'm here to tell you I had a downright "average" experience in terms of side effects. I have flushing a few hours after every pill, but it's definitely not a big deal at all. [My guess is that it's only a matter of time before the pharmaceutical companies re-name it the "MS glow" :)] Apart from flushing, I experienced 2 episodes of vomiting since switching; both of those seemed to be related to WHEN exactly I took the pill. (I usually take it immediately before eating a large meal, and don't get any GI side effects.)

    Anyway, I switched a little over a month ago, and am so glad I did. Having the freedom from anxiety and depression has been HUGE. I feel like I have my life back. For me, gastrointestinal side effects are a breath of fresh air compared to the side effects I've experienced before.

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  86. One month of Tecfidera use for me and it has now been terminated by my medical team, which is disappointing but necessary . 1st week or two, just fine. By fine i mean g.i. distress, but i could still work a 40 hr week as long as i made time to use the bathroom. Then aftet week 2, vomiting began &got worse til i had a full day nonstop vomiting. After a week off to clear system, started ln 1 pill a day for a week, but would have bouts of breaking out in hives. After 1 week i had hives from scalp/ head to toe size of dimes to quarters! Been off for full week and body still hasn't totally calmed down. Over years have used other CRAB drugs until not effectve. Dont know what i would do next. Dont like options.

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  87. ...and after that confession about my Tecfidera experience, forgot to say THANK YOU Marc, for having made such a safe, frank & intelligent forum available. I truly appreciate it!

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  88. I'm really late to this post but it has been so helpful for me. I'm on Day 12. Have had flushing/itching just like others - usually about 3 hours after taking - once, this was horrible as I had taken the pill right before bed and was up from 3-4 am itching, but that was the only time I took it on an empty stomach. This was night before last. I haven't been well since. Today, I got the "ripping" stomach pain like Eileen (I also have psoriasis and am hoping it helps with that - also like Eileen!). I was just considering the ER when I remembered I have Bentyl at home and that is a drug that relaxes the GI tract (often given to IBS patients - I take for esophagul spasm). It worked almost immediately. NOw I am just very sleepy. I really hope I get better - can't live like this - but I want to give this drug a shot. Was on Copaxone since '10 and didn't do a great job with the daily shots.

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  89. I am in month 4 and want to know if anyone else is experiencing hair loss?? All my blood work came back great, so no vitamin or mineral deficiency or thyroid issues. I also definitely noticed a worsening of symptoms (tingling & numbness) for the first couple months. The random flushing continues and is annoying ... I am fair-skinned, so is very noticeable. I've been diagnosed for 15 years and on injectables the whole time. Love this drug and have high hopes for its efficacy on my MS.

    Thank you for such a wonderful forum!!

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  90. I found this blog while reading up on Tecfidera. Marc, I like the way you researched and explained things in easy to understand terms - it helped. I had optic neuritis in 2006 and was officially diagnosed with MS in 2009 and started on Copaxone which has worked great for me. No further lesions since then. I'm growing a little tired of the shots even though I only do them every other day now instead of every day. My symptoms are relatively mild. I tested positive for JC so I decided that Tysabri was out. I'm wondering how that positive might affect the possibility of lymphypenia with the Tecfidera. I have to admit the GI issues had me worried until I read the comments here. Reading some of the problems people here have had, it's scary. Undecided.

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  91. My doctor is considering switching me to the oral med Tecfidera. I have been diagnosed with MS for about one year. No symptoms other than tingling down my spine when I look down. I have been on Betaseron injections for about ten months, every other day, with no side effects other than some red ness and itchiness at the injection site. Thoughts on if i should witch to an oral med? I'm new to all of this and understand you are just giving me your opinions.

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  92. Started taking Tecfidera 10 days ago. Diagnosed 09/13. This is my first treatment and only experienced minor flushing on the half does during the first week. Once I started on the full dose I have had worse flushing, abdominal pain and diarrhea. Pain and flushing usually kick in 2-3 hours after taking the dose. The bad pain usually subsides 1-1.5hr after it starts. Last few days I have been getting the chills after the pain goes away. I have asked the Biogen nurse they assigned to me if taking it with food helps and he says no. Not sure what to believe these days. Just hope it subsides because iot is my first treatment and I don't want to go down the road to try a bunch of them.

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    1. I don't know what that nurses thinking, and not to be negative but I have found that out we know more about how this drug is going to be managed than nurses at I biogen. I found after six months when upsetting my stomach, consistently full fat plain Stonyfield Farms yogurt until my stomach is cold and then I'm good. I've also heard others say peanut butter, ice cream. hope this helps

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  93. Hello just started on Tecfedra about 2 months ago. Has anyone noticed a change in mood or memory? The starter dose has not caused any problems besides minor flushing but when I started the full dose I had unbarable stomach pain. My doc put me back on the starter dose for awile and I am doing much better

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  94. I am on my second week of Tecfidera and all I have noticed is the flushing. It is often not just my face but my whole upper body. It lasts for around a half hour and comes with mild tingling and burning. I got worried about it today and did a google search and found this blog. I have been diagnosed for 7 years and really only had the one flare which led to my diagnosis, so I consider myself very very VERY lucky. I have been on Betaseron the entire time and I can't begin to say how nice it was to hang up that needle. I continued to experience flu like symptoms while on betaseron. Some days were worse than others but I feel much better now that I am off that med.I haven't experienced any issues with my stomach with Tecfidera yet and hope that is something I do not have to deal with. My dr has ordered blood tests every three months.

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  95. I have been on Tecfidera for 3 months after 11 years on Beta Seron. The only side effects have been occasional, mild flushing. I have taken it with meals and on an empty stomach without any problems. I have felt so much better post interferon. Aches are gone and depression has improved. I am having blood tests every three months and everything so far is good. Thank you Marc for your insight and information on this drug. Your informative blog helped me with my decison regarding this new drug therapy.

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  96. Just stopped by for a friend with MS, just prescribed Tecfidera. What a spot-on blog you have here! I'm sending her the link now.

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  97. I enjoy reading all the posts on Tecfidera. I on day 10 of the drug. I've not had any trouble with flushing or nausea. I have had severe pain in my left arm. The pain drops me to my knees and the arm is uncontrollable. I'm not sure if it's being caused by my MS or the drug or a combination of the two. Curious to hear if anyone else out there is experiencing similar issues. Stay strong!

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  98. Day One of Tecfidera: Took it at 9am, aroung 12:45 my face felt hot, as did my chest. I went to the restroom and I was bright as a lobster and it has spread to my chest and legs. Its now 1:45 and it feels like its subsiding. Dont know what tomorrow holds.

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  99. Thank you so much for this blog and cutting through all of the bs! I was diagnosed with MS 14 years ago and after 10 on Copaxone, had no spots left that weren't hard, itchy damaged red lumps. Neuro put me on Tec last week. Week one at 120 mg twice daily I had itchiness and severe gas, embarrassing but tolerable. Week 2, Day at full dosage, 240 mgs twice daily, I had a severe pounding headache, flushing, itchiness, and nausea/vomiting all night. I also felt weirdly depressed and numb on Tec, similar to gabapentin which also makes me vomit, like my brain is full of cobwebs or marshmallows. I did eat a full meal with healthy fats, as recommended, with every dose. Now I have a call in to my neuro to discuss backing off on dosage, as I cannot be sick like last night next week when I start a new job. Health and happiness to all fighting this maddening disease.

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  100. Hi,
    Thank you SO much for this information on Tecfidera. I was diagnosed with MS in 2006 at the age of 33. I have only had 3 major flare ups thankfully that weren't as bad as what some experience. However, I am concerned about the potential for hair loss. Being a woman, someone previously stated that this is a vanity thing and I do wonder about it. I am SICK TO DEATH of sticking myself with a needle as I have been on Betaseron since day one. I find myself missing MANY doses because I can't handle the pain at injection anymore and I am over having hard painful lumps from injections. I am certain I wouldn't have most of the GI issues since meds that normally carry a GI side effect don't bother me. I am wondering if the increased depression is caused by this med or just in MS in general acting up. I have bouts of horrid depression and I don't want them worse than they are already. Any comments on that would be appreciated!!

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  101. Is anyone concerned or have comments on Tecfidera's ingredients including Sodium Lauryl Sulphate? Since this is used in laxatives and enemas, it is no wonder one of the side effects is diarrhea. Please post some comments. Thanks.

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    1. I am newly dx and this is going to be my first DMD. I have elected to start next week after my stepson's wedding. I have all kinds of mental heartburn over the SLS, FD&C blue and gelatin (to pick out a few of the ingredients), all of which I have avoided for years in pursuit of a healthier lifestyle. I will be sending those concerns to Biogen with my feedback. Lots of reading in the last few weeks, hoping for the best, preparing for the worst. ~R

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  102. I have been on Tecfidera for two months. So far so good because the Copaxone gave me indentations and very hard taking the shots daily. I am not sure if the Tecfidera contributes to the constipation but i have not experienced any GI issues/ I have the flushing intermittently. I have had the cold and the flu since being on it,so I am not sure if it suppresses the immune system.I really like this medication so I am going to stay on it,no huge issues at all and I agree the people you hear from maybe it just does not work for them. However,as we know MS is so individualized!

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    1. Could you comment on how your symptoms have improved, specifically? Just curious, thanks.

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  103. I was diagnosed with RRMS 12 years ago and have been on Rebif all that time with no relapses. I am lucky to have a very mild course of the disease. My first documented MS attack began with eye problems that turned into double vision. IV steroids, rest, and time returned my vision. 2 months ago my neurologist gave me the opportunity to change from injections to pills. Naturally I chose the Tecfidera. Flushing, tingling, itching lasting about 20 minutes occurred the first few times about 2 hours after taking the pill. 2 months later and I have been having blurry vision and feeling not quite right. The last two nights I have had vertigo, the room going left to right very fast, that lasts a few minutes then settles down, always when laying down after turning from left to right. I went to my internist and he said I had nystagmus and didn't think the Tecfidera was working for my MS as well as the Rebif. He sent a note to my neurologist and I've tried to contact my neurologist and left messages, then today the pharmacy said they called in a prescription for Singulair, an allergy medicine that is supposed to help stomach problems associated with Tecfidera. I called back to the neurologist office and left a message for a nurse or the doctor to call me about my eye problems. My eye symptoms are the precursor to the double vision I had 12 years ago. Rebif works in a completely different way from Tecfidera and Tecfidera is only a theory - they don't know how it works. I want to find out if Tecfidera is working for me. I don't know if an MRI would show any new lesions or what is happening. Any thoughts?

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  104. I certainly understand your concern. Unfortunately, the best advice I can give you is to continue to try to contact your neurologist. Ultimately, only he/she can make the determination about the medication. Could be that it's taking a little while for the new drug to kick in, I believe it generally requires two or three months to become fully effective. Again, though, I'm no doctor, so you should definitely get in touch with your N…

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  105. I have been on Tecfidera and passed the 3 month mark. I had severe flushing and nausea but it did settle down however a feeling of being sickly remained but bearable in the grand scheme of things I guess. I ended up ceasing the medication during a depressive episode. When I re-started the medication I developed a cellulitis infection so I ceased the medication. The neurologist didn't feel the infection was related so I started the medication again. I have severe bloating (6 months preggers belly) and quite notable mood swings. It's frustrating not knowing what is due to the medication and what is just coincidental. Good luck everyone.

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  106. Hi, I have been on Tecfidera for few months and my white blood cells fell from 8 something to 4 something. Also lymphocytes doped below the norm. My doctor says its not severe and it can pick up. He wants me to stay on Tecfidera. Do you think it makes sense. Is it possible that this dose is huge for me. I weigh less than 100 ponds. Does body mass matter? I assume it should.

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    1. I suggest you get a copy of your blood test results so that you can see exactly what you are lymphocyte and leukocyte counts are. Here's a link to a set of guidelines being used by one of the foremost MS centers in Great Britain, regarding cell counts and the continuation of tecfidera in their MS patients. It's a bit technical, but it's well worth your time to try your best to understand it. I would print it out and take it to your doctor for further discussion about whether or not you should continue on the drug.

      http://multiple-sclerosis-research.blogspot.com/2014/10/clinicspeak-update-on-tecfidera-pml-case.html

      Wishing you the best...

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    2. was on tecfidera for 5 months ( was off meds and doing well for 6 months) I had one huge relapse 6 weeks on tecfidera tested jc neg at the time. Became incredibly ill at 5 months on fever headaches non stop vomiting for days profound weakness to left entire side and right leg. Called neuro for 5 days consecutively stating I felt like I was dying please help. He could notbe bothered. My primary doc called and still he had no recommendations. I quit tecfidera the day that second relapse/illness started against medical advice. Fast forward a year later and I test highly positive for jc and my dr will not release my MRI results to me I have to make an appointment as he called today (first time he has ever picked up the phone in all the years I have had him) and he sounded scared. I do not believe he is concerned at all about me or any of his patients for that matter but if he is scared and locking up my mri results I can only guess that he fears alaw suit so now I am waiting for my appointment where I will demand copies of my results. my fear is pml is showing up on that mri. Off meds for a year and no relapses. I have researched all the meds to death and there is nothing they could talk me into trying. I just hope I did not allow the doc and drug company to take me from minimal MS to terminal, but that is the only thing that I think could make my dr call me and lock down my mri results.Wish me luck!

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  107. Hi i am 20 years old, recently got diagnosed with RRMS doctor is giving me the option to take tacfidera, guess he thinks i need it, but its the first medication I'm trying. Is that dangerous you think? please help

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  108. Hi Sandra, so sorry to hear about your diagnosis, but try not to get too freaked out by it all. The latest thinking is that early treatment can help head off the worst aspects of the disease, so at least your Dr. is on the cutting edge. Just make sure he keeps a careful eye on your blood cell counts (he should be doing blood tests every two or three months, at the least). If you have trouble taking this drug, there are others out there to choose from. None of the drugs is perfect, and none of them cure the disease, but they should help you maintain a good quality of life. In the meantime, make sure you eat well (not too much gluten, dairy, or refined sugar) and don't let MS rule your life. Take it from an old fart like me, be young with all of your might. BTW, that's a line from an old 60s song by a group called the Dave Clark Five… Wishing you the best…

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