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There’s been a spate of news in the last two weeks regarding existing and proposed MS drugs, much of it on the negative side. Several drugs have been rejected by the European regulatory agencies, and another has seen the specter of its deadly side effects continue to rise.
Although much maligned by the MS activist community, many of the drugs prescribed for MS have in fact improved the quality of life for many of the patients taking them. Although exorbitantly expensive, not targeted at the root cause of the disease (which remains unknown), and of help to only a portion of the MS population, the approved drugs have been shown to reduce the rate of relapses in some RRMS patients, though there is much question over whether they actually slow the insidious progression of the disease.
The injectable CRAB drugs (Copaxone, Rebif, Avonex, and Betaseron) have been demonstrated in clinical trials to significantly reduce relapse rates in about one third of patients taking them. Copaxone has a relatively mild side effect profile, but the other three compounds, all forms of beta interferon, often make those taking them suffer flulike symptoms for a day or two after dosing. For the patients in whom they work, though, a significant drop in relapse rates can substantially lessen the impact of the disease on their lives. Unfortunately, after over a decade of use, it's still not clear whether or not these drugs have any influence on the progression of disability. A recent report out of Great Britain challenged the notion that the CRAB drugs positively impact progression (click here), but other studies (click here, here, and here) seem to support the claim that these drugs do at least something to slow progression.
A newer generation of MS drugs, including Tysabri, Rituxan, and the recently approved (by the FDA) Gylenia offer a marked uptick in efficacy in both the reduction in relapse rates and MS symptoms, as well as the proportion of the patient population for whom they are beneficial . Unfortunately, along with this increased efficacy comes an increased severity in their potential side effects, which can include deadly brain infections and cancer. These drugs, too, do nothing to address the underlying cause of MS, and work by profoundly altering the workings of the very complex and little understood human immune system, the consequences of which, over the long-term, have yet to be seen. Still, the sometimes dramatic improvements experienced by some patients taking these drugs have led many to be extremely reticent to give them up. In the case of Tysabri, I personally know several patients who, after several years on the drug, have tested positive for the virus that causes PML, a ghastly brain infection, but still refuse to come off Tysabri because of the positive impact it has had on their lives.
Unlike some other MS voices on the Internet, I'm unwilling to label the current crop of MS drugs "snake oil", simply because of the positive influence they do have on the lives of many patients. Certainly, they do nothing to cure the disease, and I do doubt their ability to significantly impact the progression of MS, but I know of enough patients whose lives have remained relatively productive in large part due to these medications that I can't help recognize their value. The actual financial cost of these drugs is mind-boggling, with the price of the newly approved Gylenia (the first oral medication approved for MS) coming in at almost $50,000 per year, and I abhor the fact that MS has been turned into the goose that continues to lay the golden egg for many pharmaceutical companies, but the apparent positive effect of these compounds shouldn't be ignored. Before the introduction of the CRAB drugs, MS was known among physicians as a "diagnose and adios" disease, one with very little that could be done to combat it. The advent of these drugs, no matter how flawed they are, has at least put some arrows in the quiver of those trying to fight MS.
Unfortunately, all of the drugs currently approved for MS have only been shown to work on patients suffering from the relapsing remitting form of the disease; those of us suffering from the progressive forms remain shut out from any even nominally effective treatment. Very few drugs have even been trialed for use on progressive MS patients, but recently at least some attention has been turned to the plight of those suffering from SPMS and PPMS (click here).
Okay, enough of my bloviating about the current state of MS drugs. Here's a rundown of the latest news regarding MS pharmaceuticals. The fact that many of the articles linked to come from financial websites speaks volumes as to the sad state of affairs regarding MS as Big Business:
- Biogen, the makers of Tysabri, released its monthly report on the rate of PML (a devastating brain infection) in patients taking the drug (click here). When first starting Tysabri therapy, patients in the United States are enrolled in what's called the TOUCH program, designed to carefully track them for signs of the infection. The risk of PML infection as a result of Tysabri therapy has long been touted as 1000:1. The statistics released earlier this month show that the infection rate for patients taking Tysabri for less than two years falls well within that figure, but starts to rise dramatically once patients surpass the 24 month mark. The incidence of PML in long-term therapy is now stated at 2.13 per 1000, and the trend suggests that the longer patients are on Tysabri, the higher their risk of infection. After first being introduced in 2005, Tysabri was quickly withdrawn from the market when the threat of PML became known. It was reintroduced in the second half of 2006; therefore, the majority of patients taking it have yet to reach the "danger zone". As I stated previously, many patients are loathe to stop Tysabri after experiencing sometimes dramatic relief from their MS symptoms while on the drug. As the PML count increases, many patients now on Tysabri will have to grapple with some very difficult decisions.
- The European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) recommended against the approval of the oral drug Fampyra (click here), which in North America is called Ampyra. Ampyra, approved by the FDA in 2010, is the only drug thus far approved strictly for the symptomatic relief of MS. The compound increases walking speed in approximately 1/3 of the patients who take it. Some patients on Ampyra also report an overall increase in muscle strength. In recommending against the drug, the CHMP said that it "was not convinced that Fampyra’s small effect on the walking speed was a meaningful benefit for patients. The effect on speed could not be linked to meaningful improvements such as better coordination, balance or stamina or increased range of action. The Committee was of the view that the medicine’s uncertain benefits did not outweigh its side effects which included pain, dizziness, paraesthesia (unusual sensations like pins and needles) and problems with balance, as well as symptoms similar to those of multiple sclerosis that could impair the patient’s ability to walk. The Committee also noted the lack of adequate long-term data on the medicine’s benefits and safety as well as data on some groups of patients, such as the elderly and patients with epilepsy or heart problems. The CHMP concluded that the benefits of Fampyra did not outweigh its risks and recommended that it be refused marketing authorisation."
- The CHMP also recommended against the approval of the experimental oral MS medication Cladribine (click here), marketed by the giant drug company Merck. Cladribine has been used in IV form as an anticancer agent since the mid-1990s, with known possible severe side effects. Reformulated in an oral form and named Movectro, the drug went through a full trial regimen for use in RRMS patients, and was shown to reduce the rate of MS relapses and possibly impede the speed of disease progression. In deciding against the drug, the CHMP had concerns about the medicine’s safety. "An increased number of patients with cancer were observed in trials with Movectro, which may indicate an increased risk of cancer over time and with increasing doses. The Committee also noted that the benefits and the most appropriate dosage for treatment had not been fully established in patients who were expected to use the medicine. Therefore, at that point in time, the CHMP was of the opinion that the benefits of Movectro did not outweigh its risks and recommended that it be refused marketing authorisation." The drug will be up for FDA approval later this year, and it will be interesting to see if the FDA follows their European cousins’ decision.
- The CHMP recommended for the approval of the oral MS drug Gylenia, formally known as Fingolimod or FTY 720 (click here). This drug has already won approval from the FDA, and should be hitting the market sometime in the first half of this year. Gylenia is a powerful drug that greatly alters the workings of the human immune system. The compound traps the immune system's T cells in the lymphatic system, thereby keeping them out of not only the central nervous system, but the rest of the body as well. As one neurologist told me, "Tysabri keeps the cops out of a certain neighborhood, but Gylenia keeps them locked in the police station". While many patients relish the thought of giving up their injections or monthly infusions for the simplicity and pain-free action of taking a daily oral tablet, the mechanism of this drug should give pause. Though it has not yet reached the market, it is believed that neurologists will initially be quite careful in prescribing the drug. Interestingly, Gylenia is being tested as a possible neuroprotective agent, so the drug may have a double-barreled effect. It would be wonderful if science could isolate Gylenia's neuroprotective properties and develop a compound that shields nerve cells from the MS disease process, but that development seems far off in the future.
As an MS patient, I find it incredibly frustrating that millions upon millions of dollars are being spent researching, developing, and marketing pharmaceutical compounds that do absolutely nothing to actually cure the disease, but in effect turn patients into indentured servants of Big Pharma. Unfortunately, our medical research model has evolved into a highly dysfunctional beast, one which all too often ignores real patient benefit in favor of the possibility of huge financial gain. The aberrant immune reaction seen in MS is essentially a symptom of an as yet undiscovered disease cause. If even a fraction of the research dollars spent by Big Pharma on drugs designed to suppress or modulate the immune system were instead spent on finding this unknown cause, we might actually be on the road to a cure for this damned disease.
One can only hope that the beliefs of the most fervent CCSVI advocates hold forth, and vascular abnormalities do prove to be a vitally important part of the MS disease process. At the very least, may investigations into CCSVI finally wrench the focus of MS research away from the concept of autoimmunity and onto a model of MS as disease in which an immune system gone awry signifies greater ills still hidden, and at long last brings those hidden ills to light.
Can I get an Amen?
I really enjoyed your post..
and as an MS sufferer on Tysabri I do pose myself questions regarding the benefit/danger ratio...the future is yet unknown and it scares me..cuz this drug has helped me a lot.. but I still have my concerns.
hope they will finally start aiming at targeting the darn cause so we can get rid of this shit
best wishes to you!
Very well put letter. I share many of the same objections to the DNA altering drugs. They have not been in use and not tested for long range complications. By long range I mean at least 25 years and the ten year data is showing an increasing rate of fatal complications. When I failed a Rebif trial after 4 months my neuro said too bad, it might have helped. Now it seems that I might be one of the lucky ones because I did not take it long enough for it to have permanently altered my body chemistry!!!ReplyDelete
new to MS, utterly confusing and daunting that is for sure. completely appreciate your take on this crazy MS thing. oh, and AMEN!!!ReplyDelete
Forget the Amens ! Why not scream a few Hallelujhs ? This is the most unbiased, factual article that I`ve ever read about the DMDs. My question, and that of my wife, "How can they say on one hand 'significant decrease in relapses' and on the other hand 'they help only 30% of patients' ?" How do they know that it`s not just the natural progression of MS, rather than the disease itself. Strange that they have medication for the RR form (which can go into spontaneous remission with NO treatment), but nothing for the progressive forms. Just thinking out loud.ReplyDelete
You hit the nail on the head! I often wonder how much of a gamble I'm taking by not taking these meds. I tried Copaxone and Rituxan and had terrible reactions to both. I concluded that I'd rather feel good now than feel like crap for a "possibility." I was diagnosed almost 5 years ago and I have had some progression. Currently I juts treat for symptoms of fatigue and occasional spasticity although muscle weakness and balance issues are progressing. I haven't taken any Ms Therapy drugs (including solumedrol) for the last 2+ years. I'm so leery of taking anything because I always question the influence of "Big Pharma." The progression of MS is different for everyone, so how can anyone justify spending thousands of dollars a year on these meds which may only work for 30% of people? I think you are write to wonder that it is "strange that they have medication for RR form (which can go into spontaneous remission with NO treatment), but nothing for the progressive forms."Delete
No crabs or indentured servitude for me. Perhaps I only feel this way because I was never in the happy thirds. Another great post, Marc.ReplyDelete
Great post! I am new to MS and really appreciate this article. Amen!ReplyDelete
Amen, amen amen. I really think it's about time the research dollars be directed towards finding the cause. The immune theory is after all, just a theory. A great post Marc.ReplyDelete
As always, this site gives me hope with you accumulating all this info. As a member of the happy 1/3s for whom the CRABs work (Rebif for me), I'm not so happy as my ex-husband's COBRA runs out at the end of next year and I'm currently looking for a job while suffering almost daily flare ups (went off Rebif in April to try using only food to control my RRMS - big mistake).ReplyDelete
Yesterday I was looking at a community college's Pharmacy Tech program. One catch - a Hepatitis B immunization is required. So, do I let my new MS doc put me back on Rebif or wait 6 months to get the full Hep B vaccination? Decisions, decisions...Looking into the cause of MS would be a great thing, if only the drug co's would do it.
Amen, indeed. Your clarity and reason are always refreshing.ReplyDelete
I would love to see a day in which, as you mentioned, the dollars going into drug research began going into disease research. I was inspired by the recent webcast/discussion NMSS aired on ideas regarding neuroregeneration. The wait I can deal with, if only the dollars were there to start conducting some clinical trials more focused on cause and repair. Something other than band-aids (which really should be diamond studded, with the cost) would be amazing. I don't want to lose hope, but I would be lying if I denied the feeling of hopelessness that can surround this topic.
Well said in regards to the conundrum of MS drugs. I have started Tysabri, with a positive testing for the JC antibody. I'm only two treatments in, and feeling a significant change in my day to day. My mind has worked overtime to justify not only beginning, but also continued use of the drug amid every new report surfacing about PML.
A disease they don't want to cure. That is why they refute CCVSI. My injection sites for my Copaxone have worn out but I refuse to go on any other drug as Copaxone has taken the major relapses out of my life. I continue to take Copaxone and inject wherever I can. Was hoping the oral meds would be better. I will be going to Albany later this year for CCVSI. I'm holding onto hope firmly with both hands.ReplyDelete
Thank-you Marc for all your efforts in gathering and sharing information with us!! Take Care, Joanne
I AM NO LONGER ON ANY SO-CALLED M.S. DRUGS AFTER MY CCSVI TREATMENT IN JUNE...I FEEL GREAT...ReplyDelete
CCSVI TREATMENT = QUALITY OF LIFE
Well said, as usual Marc. I've been observing the worrisome seduction of Tysabri on some of my online friends, but who am I to judge?ReplyDelete
I remind myself that there are other diseases for which people routinely take life-threatening drugs -- Imuran for Chronic Active Autoimmune Hepatitis, for example. It can cause cancer and those who take it are monitored closely and are off to the eye doc and dermatologist every 6 months to be checked.
On the opposite side of the spectrum, LDN has practically no side effects & works well for a lot of us and it works by tuning up the immune system, not suppressing it, a factoid that strikes me as an odd truth for a supposed autoimmune illness.
It's clear that MS is a big, unsolved mystery, but the nutritional success of Dr. Terry Wahls, George Jelinek and others, as well as all the CCSVI findings, are galloping us along to the answer pretty quickly now. As you always say, we'll know so much more in six months or a year.
Amen indeed. I too am fairly new to MS. Have been dealing with the medical community for almost 17 years. Seems the only way to get the type of research done that you are talking about is privately. With results big business jumps on board. I know-who has the money???ReplyDelete
I echo: Amen! You have encapsulated so much in one blog entry. Very cogent and timely. Thanks!ReplyDelete
As always, very well put. I would like to make one comment. I think the RRMSer's who take the CRAB's and think they are helping them, it's very possible it's just their normal course of their disease. Maybe it is just a coincidence. I have always questioned my doc that how do you know these drugs work? If they don't work for more advanced MS, then it makes sense that big pharma will only try to sell the drugs that look like they work. Big Pharma will NEVER find a cure for anything. There is no money in healthy people.ReplyDelete
SAY NO TO DRUGS AND YES TO CCSVI.........AMENReplyDelete
AMEN, PTL, AMEN!ReplyDelete
And more power to CCSVI-Venoplasty for everyone!
I would like to add that at least one of the CRAB drugs has a potentially fatal side affect. It was well known previously in the IV Drug ==>HepC community that Beta Interferon, AKA Rebif can cause serious depression.
I was advised by my MS Clinic that in MS patients, a small percentage has been seen to lapse in to profound and life-threating depressions: "idiopathic depression with suicidal ideation". I can testify to that. Within 36 hours of taking my first two doses of Rebif after my initial diagnosis of RRMS, I dropped in to the blackest hole I can ever remember, not wanting even to eat or move from my couch. With my wife's help, I sought help immediately. More than 10 years later, I can not come off of the SSRIs that balance my brain chemistry, though it has been tried many times at speed varying from cold turkey to 16 months to wean off. Though I no longer take the Rebif (since 6+ years ago), the blackest of emotional pits awaits me should I stop taking the counter-measure drugs Rebif forced me on.
How many Interferon induced suicides are counted as depression over the MS and not put at the root cause of the depression...an Interferon permanently modified serotonin mechanism?
In case you were wondering, I was actually quite upbeat when I started on the injections: 1) I was elated that the first diagnosis of inoperable spinal cancer was wrong and, 2) I thought this was going to be a piece of cake, these little injections. I was happy to help the trials, although I had not enough knowledge at the time of the 40 or so years of failure to prove the underlying autoimmune hypotheses.
PS I have been in remission for more than 6 years even though all my drug therapies had started to fail miserably back then--but that is an amazing story for another forum.
You are not alone; We will prevail.
Richard, waiting for my CCSVI-V...............
You, sir, put my blog to shame. CRAB's did nothing for me, and I instead find myself running through rigorous courses of varied antineoplastics (first Mitoxanthrone, now Cyclophosphamide), anxiously awaiting Health Canada's approval of Gylenia, while at the same time hoping my group benefits will cover it under my plan... perhaps at least defraying the cost, if only even partially.ReplyDelete
Fairly new to MS. Thanks for the well written information. I went to Merida Mexico in November, CCSVI-venoplasty has helped more than any meds. Although the neurologist there said to keep the Avonex going as a "hopeful" means to also fight the MS.ReplyDelete
Surely a drug that reduces progression to near zero - as is just around the corner for rrms - is as good a cure? (see Campath, Ocrelizumab, Ofatumumab)ReplyDelete
Thanks for your wonderful blog. I'm finding it very helpful as I am brand new to the MS world. My doc has given me a choice b/w Copaxone and Gylenia. I have a question about your assertion that the newer drugs "offer a marked uptick in efficacy in both the reduction in relapse rates and MS symptoms, as well as the proportion of the patient population for whom they are beneficial." Is this true? Would you be able to give me a source so I can read up on this? I haven't been able to find much info on comparisons b/w Copaxone and Gylenia. Any help would be greatly appreciated. Thanks for your great blog!ReplyDelete
amen and a "woop woop"ReplyDelete
now if we can only get this neurological repair stuff moving faster. things are just moving tooo slllooowwwww.......greek
Amen to your thoughts. If big pharma in any way is the key factor to the negative thoughts on CCSVI, it's not only inhuman but also criminal.ReplyDelete
Wow, I am happily surprised at the amount of attention this post has received. With all of the controversy swirling around MS these days, it's easy to forget that MS medications are still at the forefront of most patients' minds.ReplyDelete
Thanks to everybody who commented, but because of the number of comments, I'll only individually addressed those that pose specific questions or issues. Hope everybody understands…
Anonymous-your questions regarding the validity of the data reported are well-founded. The best explanation is that the drugs are tested against a placebo control group, and when the patients taking the drugs are compared to those who took a placebo, they exhibited less relapses over the course of the studies (usually about two years). Your point about the natural progression of MS is well taken, but again, the claim is that double blinded trials should show a statistically significant difference between the two study groups. Drugs are tested on the RR form of the disease because it's easy to track relapses and enhancing lesions. Disease progression is much more difficult to track, and it would take a much longer trial to show statistical relevance. Basically, it's just not worth it to the pharmaceutical companies to spend money on long-term trials that would benefit a relatively small patient population. It's all about the money…
Jenna-sorry, I'm really not qualified to help with your dilemma, and I realize you're really not looking to me for an answer. Why should drug companies look for the cause of MS, when they're making billions as it is. Capitalism is a wonderful engine for driving an economy, but as a motivator for medical research, it sucks…
Daphne-it would be great if some legitimate scientific studies were done on LDN. Unfortunately, that money thing crops up again. Naltrexone is off patent, so there's no money to be made from it. Why do tests on the substance that apparently helps many patients, but won't make anybody any money? How silly…
Beth-again, your point is very valid. It is hard to differentiate between what the drug is doing and a patient's normal disease course. Some patients definitely note a drop in their relapse rates, but if a patient wasn't suffering from any relapses to begin with, it's difficult to judge. I suppose enhancing lesions could be a benchmark to use. Most likely, these drugs don't work on the progressive flavors of the disease because a different mechanism of nerve cell destruction comes into play. There are several theories on this, which I will try to make the topic of a future blog post…
Richard-great point about interferon induced suicides being counted as MS depression. Something that should definitely be looked into, but probably won't be. Sorry that Rebif send you into an ugly place…ReplyDelete
Andrew-I checked out your blog, and you have nothing to be ashamed of. You're quite a good writer yourself…
Anonymous-Campath does indeed hold much promise, but as with all the monoclonal antibodies, the ramifications of its long-term use are not known. These drugs don't just tinker with the immune system, they alter it profoundly. Campath is not without its own nasty set of side effects, but I have heard some remarkable stories about patients who have benefited terrifically from it…
Anonymous-I'm not a physician, and really don't feel comfortable handing out recommendations for medication choices. I will say, though, that Copaxone appears to be a relatively benign drug, that is well tolerated by most patients. Unfortunately, it only appears to be effective in about one third of the patients who take it. Gilenya, on the other hand, is about twice as effective, but carries with it greater risks of side effects. Lots of info on Gilenya can be found here:
Copaxone info can be found here:
Googling "Gilenya trial results" and "Copaxone trial results" will get you many more sources of info…
I'm currently on a Tysabri vacation for at least 3 months. It'll be interesting to see what happens...in the mean time, I'm SOOO done with big pharma. Like you, and so many who have replied to this blog entry,I'd like to see more energy and $$$ go toward finding a cause instead of a band-aid! Tysabri has been good for me in the essence I've had no new flairs while on it, but my progression deepens, slowly, insidiously.ReplyDelete
Thanks for the great post.
Marc, I haven't even read you post yet...but wanted to say congratulations and thank you! My husband just listened to your NPR interview this morning and came upstairs to tell me you were on...my friend Toni Bernhard will be on Morning Edition today too!!! How cool is that? Two people I admire on NPR on the same day!!! I will listen to the broadcasts on my computer after 12 when they are available as podcasts...I'll read the above post later...dentist appointment to get out the door for...but just wanted to well, say: You done did good!!!ReplyDelete
I caught the beginning of your story on npr today. the one about the vascular procedure opening veins. you sound like a person open to new ideas. have you heard about the link between dental work and MS? i am not an ms sufferer and i wasn't reading about ms in particular. i did have my mercury fillings out a while back. before i did this i read up on the topic of dental health and how it affects overall health. one book in particular (it's all in your head, hal huggins i think) was convinced there was a link between MS and dental work. he saw improvement in MS patients after removal of mercury fillings. i probably won't do the book any justice trying to sum up his points. and i can't remember if MS was related to amalgam fillings, or chronically infected root canals, or some other dental procedure. but i do know low dosage mercury poisoning can look like a lot of things and i know heart disease is linked to dental infections. So it seems dental work can have has far reaching health effects.ReplyDelete
other unlikely places to look. EMF (electromagnetic fields) and MS. we all know (i think) the dangers of living close to powerful electrical transmission lines but EMF can come from lots of new places these days. You may be getting a large dosage and not even know it.
Finally, an interesting book on diet i'm reading is the perfect health diet. i know, terrible name. but the book is pretty fascinating and the has tons of studies referenced. their take as well as mine is that any health issue will be improved with good diet and correcting deficiencies. Again, i can not begin to sum up the book here but it certainly did surprise me.
Amen ! check this outReplyDelete
This comment has been removed by the author.ReplyDelete
(sorry other post had a bad link)ReplyDelete
I'd also like to bring attention to the new Tysabri/PML Facebook Group. Five families PML have found one another on it. We also try and keep it updated with the lastest news on Tysabri and PML.
Chris-link between amalgamated fillings MS has largely been dispelled. I'm sure that dental work does have systemic impact, and that having mercury leaching into your body can't be a good thing, but the one to MS was never scientifically established.ReplyDelete
EMF exposure, as well as exposure to all of the other in energy fields we are exposed to (microwaves, TV and radio, radar, etc.) is also, I believe, a hidden source of all kinds of disease, mental as well as physical. We are electrical beings, getting bombarded with forces that disrupt our inner wiring must have consequences.
Link between diet and MS is pretty well established. Thanks for your comments…
Judy-very interesting link. Thanks.
New grad nurse-my e-mail address is: WheelchairKamikaze@gmail.com
Amen!! I'm on Tysabri b/c the CRABS didn't work for me, tried 2. My grandmother had MS and was bed ridden, blind and incontinent in the 60's - before drug companies got into the fray - and she recovered, yes, recovered to where I knew her only as another old woman who used a walker, only by finding out she had food allergies and then changing her diet and removing herself from the stress in her life by moving in with her sister. I'd like to see research done on what natural things can be done to support a body with ms... along with the WHY of ms.ReplyDelete
amen amen amen. I'm just coming off Ty...the risks no longer out weigh the benefits...while it did seem to slow down new development of lesions...I didn't feel "better" on it and now I am positive for JC virus and into my second year. Copaxone didn't help and I'm nervous about the other crabs which were never even tried on me...so Gilenya? I don't know. It all kind of freaks me out...so many unknowns. For now 3 months of pulse steroids...and then we decide what next...ReplyDelete
Dear Mr. Slecker:ReplyDelete
I listened with great interest to your comments on NPR's Morning Edition this morning (Monday, January 31, 2011) regarding approaches to managing MS, and find this blog very interesting.
You may be interested to know that I am funded to conduct a multi-year clinical research trial in Birmingham, Alabama, to determine whether either of 2 different methods of physical rehabilitation may benefit persons with MS who find that they have reduced use of one of their arms because of the disease. (No drugs are used in our approach, and participants may continue with whatever medicines they are taking.) Your story about yourself sounded as if some of the difficulties that you experience, as well as those of other persons who have MS, could qualify for participation in our program.
If possible, I would like to describe our program in a little more detail on your blog and provide useful web links, but would first need your permission to do so and also approval by my university's review board for research, which must first sign-off on the content of any recruitment notices.
If this might be possible and agreeable to you, please reply to me at firstname.lastname@example.org
With kindest regards for the new year,
Victor W. Mark, MD
Department of Physical Medicine and Rehabilitation
University of Alabama at Birmingham
Why don't you try CampathReplyDelete
Or chemo / stem cells - which are given today routinely to many cancer patients across Hudson River in HUMC with very high success rate? It is the same treatment.
Forgot to say, that everybody I know who had chemo / stem cells INSIST they were cured. Which most likely is not exactly accurate from the point of view of their doctors, but with getting out of wheelchairs - they are not impaired in any way in their daily activities, do sports and travel, and eating whatever they like....ReplyDelete
I'd say this venue is definitely worth investigating.
For many of us with MS, doing one of either of the CRABS or the next line of Meds, including Tysabri, Gilenya, Rituxan or Cytoxan, is all that can be done to keep the disease progression at bay. There are those, that do not believe in the medications and then there are those like me, that know that the meds are working to a degree, because without it (during my hiatus) I was doing much worse. And then even afterwards when it lost efficacy and having to begin a second line medication, how much "better" I became physically and emotionally... Emotionally because I GOT MY LIFE BACK...ReplyDelete
Learn more of me at either my website (http://www.msviewsandnews.org) or at my blog (http://wwwmsviewsandrelatednews.blogspot.com) -- [ scroll thru the blog to find the button for BEST Multiple Sclerosis Blog of 2010 ]
Yes, there are Pros and Cons to everything in life. Including ms therapies, treatments, alternative meds and even now with CCSVI, and Stem Cells.....
Marc is a great informer of information.. I give Qudos to him and the many other MS Bloggers out there who provide information (Pro and Con) of Multiple Sclerosis.
President and Founder of
MS Views and News / Stu's Views and MS News
I've just had my second dose of Tysabri. In between dose 1 and 2 I've had to get myself pumped full of steroids to get me from wheelchair to walking in a week.ReplyDelete
I agonised over whether to take Tysabri and I'm still not sure I've done the right thing. But having my first MS episode leave me blind and paralysed and keeping me in hospital for 4 months has made me think that I need to do anything I can to keep myself walking and talking. It was a shitty decision to make, but having no luck after 5 years of Rebif made me go for the Tysabri.
Amen and AmenReplyDelete
I have been onReplyDelete
Tysabri for 5 years and continuing. I also take Fampyra and LDN.
I say good luck. I have been suffering M.S FOR 15 YEARS.