click here). As fantastical as this might sound, more and more physicists and cosmologists are coming to accept the notion that our universe is but one of many. In fact, most of the latest cosmological theories and mathematical models of existence point directly to the reality of a physical realm comprised of multitudinous universes, as well as many dimensions beyond the three which our tiny little brains can experience and comprehend.
The form that these multiple universes might take varies from theory to theory, from each universe abiding to its own unique set of physical laws and properties (and therefore some being quite bizarre and very different from our own), to a limitless number of universes similar to this one, with perhaps only subtle changes distinguishing each. The latter model supposes that there may even be an infinite number of like universes each playing out different timelines based on the boundless possible choices each of us makes on a daily basis. In other words, there could very well be universes out there where I don’t have MS, or where I finished that novel I started in 1988, or where my parents never got divorced. Of course, that would also mean that there are universes in which my parents never even met, in which case those universes would have never been graced by my presence. Such a pity.
Given the fact that I have way too much time on my hands and have been able to parse my old healthy life rather obsessively and in minute detail, picking out key instances when a different decision or action on my part might very well have resulted in an entirely different existence, maybe even one devoid of this damnable creeping paralysis, I find the idea of multiple or parallel universes extremely appealing. It gives me great pleasure to imagine a universe in which I am at this very moment driving a sleek convertible sports car way too fast down the Pacific Coast Highway. Or a universe where I would have never spent a minute watching a Tom Cruise movie (sorry, he makes my skin crawl). Or one in which my wife Karen and I just returned home from a long, leisurely walk in the park, strolling arm and arm with effortless grace and ease. How nice to think that all of these scenarios could very well be playing out as I write this, in universes coexisting with our own. Hey, the greatest minds in science say it's possible, and who am I to argue with the greatest minds in science?
Alas, here I am rooted in this universe, in which it’s time for yet another edition of Bits and Pieces, my semi regular compendium of mostly MS related news and items of interest. I hope you find this batch interesting, enjoyable, or at least tolerable, and here’s to the notion that in most other universes there’s no such thing as MS and thus no reason for some alternate version of me to write this blog or for some alternate version of you to read it.
Anyway, on with the show (I apologize in advance for the length of this post, but as I was writing it news broke that the MS drug Lemtrada had been approved by the FDA, which is a pretty big deal, so make yourself comfortable, this may be a long one)…
♦ Reversing a decision it made late last year, the FDA has approved the powerful drug Lemtrada for use in MS patients (click here). Since the drug was initially denied approval in the USA last December it was approved in over 40 other countries, including most nations in the European Union. US patients and neurologists had been agitating for its approval since last year’s FDA denial, as the drug had been shown to be remarkably effective in trials and had been used off label for some years to treat MS patients here in the USA (it was previously known as Campath). One MS neurologist I spoke to soon after the initial denial was quite upset by the FDA’s actions, telling me that the drug had not only rescued one of his patients who had been ravaged by a particularly aggressive case of relapsing remitting MS, but had actually allowed the patient to recover all the way from completely bedridden to back to work.
Lemtrada (chemical name alemtuzumab) is an intravenous drug that works by wiping out a patient’s existing immune system and then allowing it to reconstitute, presumably without the autoimmune tendencies that many believe play a major role in the MS disease process. In some respects, this is the same mechanism as HSCT, the type of stem cell therapy in which a patient’s immune system is ablated using a powerful chemotherapy regimen and then rebooted using the patient’s own bone marrow derived stem cells. It appears that Lemtrada achieves this same goal in less dramatic fashion.
Unlike all other existing MS disease modifying drugs, Lemtrada is not meant to be used indefinitely by the patients to whom it is given. Instead, the drug is administered intravenously for five consecutive days, and then again one year later for three consecutive days. Some patients may require additional infusions at some point down the line, but most do not. Trials have shown that in about 70% of patients with active RRMS the drug eliminates all signs of disease activity (relapses and new lesions) for at least three years after treatment, and in some cases for many years more. In other words, Lemtrada has been shown to put the long-term kibosh on all MS symptoms for the majority of patients with active relapsing remitting disease who have gone through the treatment protocol without further dosing, a result not seen with any other existing MS drug therapy. Some patients have even experienced a reversal of their symptoms, regaining neurological function that had been lost to the disease. As has been the case for all MS drugs so far, Lemtrada unfortunately has no apparent benefit for patients suffering from progressive MS.
These astounding results do not come without risk, however, as a majority of treated patients develop some secondary autoimmune disorders (most often autoimmune thyroid disease, which can typically be controlled with medication), and a small percentage (1%-3%) develop a very serious autoimmune blood disorder, which if caught early can be remedied before any harm is done. As might be imagined, the long term effects on MS patients by a drug this powerful are hard to predict, but the drug has been used to treat patients suffering from various blood cancers for decades. For these reasons, patients treated with Lemtrada must be monitored very closely (most likely in the form of monthly blood tests) for years after their last infusion of the drug.
In the UK, Lemtrada has been approved as a first-line therapy for patients with highly active RRMS. Here in the USA, the FDA has approved Lemtrada only as a third line drug, to be given to patients whose disease has not previously responded to two different MS therapies. This restriction may prove to be problematic, since there are indications that early treatment with the drug provides patients with the best chance for success, in the form of a complete and long-lasting remission of all MS signs and symptoms. For a full discussion of Lemtrada and its associated issues, I urge you read this article recently posted on the always informative Multiple Sclerosis Research Blog, which is maintained by neurologists at Barts and the London Medical School in the UK (click here).
Lemtrada could be a game changing drug for many RRMS patients, particularly those hardest hit by the disease, but the drug’s risk/reward scenario may prove daunting to many patients and neurologists. It will be very interesting to see how adoption of this drug plays out over the coming months and years. Will the prospect of years without any disease symptoms whatsoever tempt patients to try Lemtrada despite the drug’s potentially serious side effect profile?
Wouldn’t it be nice if researchers could come up with a highly effective MS therapy that didn’t scare the living shit out of the patients who it is supposed to help? Perhaps in an alternate universe all forms of MS can be effectively treated with hot fudge sundaes. I hope some version of me is living in that universe.
Edited To Add: a reader who has worked with this drug in her job as an oncology nurse left the following comment, which I thought valuable enough to place into the body of this post.:
As a former oncology nurse, I am familiar with Campath and this drug scares me. You can say that it has been used in treatment for blood cancer for years, but you may not know is that it is not used often and the practice I worked for stopped giving it in our usual outpatient clinic because of severe infusion reactions. There were even deaths, although that did not happen at our facility. I treated several patients with the drug and the infusion reactions were significant. The dosage and frequency of treatment is likely very different for MS, but I have seen what it can do and it is definitely a big gun that should be used very carefully.
As I previously noted, Lemtrada (the same drug as Campath) is used differently to treat MS than it was to treat cancer, but the concerns raised are certainly valid. Infusion reactions are reactions that occur while the drug is being given intravenously to a patient. Such reactions were noted in the Lemtrada MS trials, but were not deemed to be dangerous enough to prohibit the approval for the drug for use in the treatment of active relapsing remitting MS. Still, yet another variable to consider when presented with the option of using Lemtrada to treat your disease. As always, knowledge is power, and I thank Mary Beth Knapp for contributing this information.
Edited Again to Add: the folks at the Multiple Sclerosis Research Blog have posted some very interesting and valuable information on taking the risk out of Lemtrada. One of the topics discussed are infusion reactions, so this is a very pertinent and important read (click here).
♦ There has been a lot of chatter recently about the relationship between the gut and the nervous system, with evidence pointing to a direct connection between dysfunction within the digestive system and disorders of the brain and spine. One study found a relationship between a disease known as “leaky gut syndrome” and multiple sclerosis and other inflammatory diseases, at least in mice (click here). Researchers found that mice with leaky gut syndrome had higher levels of inflammatory immune cells and lower levels of immune cells that suppress inflammation, leading those mice to suffer more severely when induced to develop the mouse version of MS (on a side note, the mouse version of MS is an absolutely horrible mimic of the human disease and I usually tend to discount almost all studies that rely on it, but in this case the findings are backed up by similar observations in people).
A fascinating article in the New York Times explored the relationship between celiac disease and disorders of the nervous system (click here). Celiac disease is an autoimmune disorder of the gut triggered by the gluten proteins contained in wheat and other grains. The article details several cases in which diseases supposedly rooted in the central nervous system, like dementia and autism, were completely reversed when patients were found to have celiac disease and put on gluten-free diets. Pretty amazing stuff, which only further fuels my suspicion that many if not most MS patients (and patients suffering from other nervous system disorders) are afflicted with some as yet unidentified systemic disease rather than one confined strictly to the brain and spinal cord. Unfortunately, modern medicine has become so specialized that each physician tends to focus only at those areas of their particular expertise when examining a patient without giving enough thought to other areas of physiology that might be impacting the patient’s condition, in effect missing the forest for the trees.
Other studies have looked at the trillions of single celled organisms that populate the gut (known as the gut biome), and found that the gut biome of MS patients is often markedly different than those not suffering from the disease (click here). Normally the relationship between our bodies and the microbes that inhabit the gut is mutually beneficial. However, it seems that in patients with MS and some other immune related diseases the mix of microbes in the gut is noticeably altered. There is so much mounting evidence that links the gut biome to MS that four major US multiple sclerosis research centers have formed the MS Microbiome Consortium to further investigate the role of the microbiome in multiple sclerosis. Turns out that 80% of our immune system is contained within our gut. Who knew?
If you find all of this interesting and who would like the chance to discover just what little buggers are residing in your gut, then you’re in luck! The Human Food Project is currently running the American Gut program, which for $99 will provide a kit with which you can sample your saliva, skin, and poop (I know, yuck) to find out precisely what microbes are living on and in you (click here). The Human Food Project will do a complete DNA analysis of your samples and return a full report. The American Gut program is a crowd funded research effort, so your $99 will not only go towards purchasing your sampling kit but also help fund this ongoing project. I ran all of this info past the naturopath who works at my MS clinic before signing up, and she said that there is no guarantee that the results of this analysis will turn up anything actionable, but that you never know. At worst I’d be helping out with a valuable research initiative. Good enough for me, so I’m currently awaiting the arrival of my saliva/skin/poop testing kit. BTW, for readers residing in the UK, there is also a UK Gut program, so all you British folks can participate as well (click here).
♦ I’ve previously written about the problem of misdiagnosing MS on quite a few occasions, and here I go again. It’s estimated that between 5%-15% of patients diagnosed with MS are not actually suffering from the disease but instead from one of the dozens of other conditions that can mimic multiple sclerosis, a notion that is quite disconcerting to say the least. I myself am suffering from some strange mix of increasingly debilitating symptoms that may or may not be multiple sclerosis, so this issue is of particular interest to me. The website EmaxHealth has recently run a series of short and easily digestible articles on this subject, all of which are worth reading. The first is titled simply “Misdiagnosing Multiple Sclerosis” (click here). Other articles in this series include “Is the Diagnosis of Lupus or Multiple Sclerosis?” (click here), “Is It Multiple Sclerosis or Transverse Myelitis?” (click here), and “Is Multiple Sclerosis Mainly an Autoimmune Disease?” (click here). As I’ve also stated previously it’s easy to drive yourself nuts with this kind of information, so be careful, but if you suspect you may have been misdiagnosed these articles could be very valuable reading.
♦ Progressive multiple sclerosis is a particularly nasty form of the disease, in which patients don’t suffer from the onset of MS attacks (relapses), but instead suffer a steady neurologic decline without ever returning to their previous level of functionality. If I do have MS, it’s of the progressive type, and I’ve been forced to watch myself go from slight limp to nearly complete gimp over the last 11 ½ years without any respite or period of stability. Take it for me, this sucks. Roughly 10% of MS patients suffer from progressive disease from the outset, a form of MS called Primary Progressive (PPMS). A substantial number of people with relapsing remitting disease (RRMS) eventually transition to Secondary Progressive disease (SPMS), at which time they stop experiencing relapses and remissions and instead start accumulating ever-increasing neurologic dysfunction. Currently, there are no effective treatments for any form of progressive multiple sclerosis.
The International Progressive MS Alliance (click here) was formed in 2012 to specifically address the vexing problems posed by progressive multiple sclerosis, and to speed up research and the development of therapies aimed specifically at this form of the disease. The Alliance recently announced the funding of 22 research projects in nine countries, all aimed at helping to unravel the mysteries of progressive MS and to eventually smite this horrendous beast (click here). Let’s hope the Alliance realizes its ambitious goals sooner rather than later, as patients suffering from progressive MS have for too long been ignored by the medical research community.
They say a picture is worth 1000 words, so a video must be worth millions, and the following video put out by The International Progressive MS Alliance sums up the horrendous nature of progressive MS and the problems the disease presents to researchers better than any of my long-winded blog posts ever could. Please watch, but I’ll try to sum up the message of the video in one word: “Help!”
♦ I’ve always found it mind-boggling that pharmaceutical companies are allowed to pay off the doctors who prescribe their drugs. Of course, these actions are never quite as blatant as bald-faced bribery, and instead these payments are dressed up as speakers’ fees, trips to educational seminars, meals provided to office staff, etc. Despite this song and dance, the fact remains that many doctors receive significant amounts of money from pharmaceutical companies, and let’s face it, Big Pharma wouldn’t be doling out all that dough if they didn’t believe it was influencing the actions of the doctors receiving their “generosity”.
If you’ve ever wondered just what kinds of gifts, honorariums, and other payments your doctors may be getting from their pharmaceutical masters (oops, I mean partners), you are now in luck, at least if you live in the USA. Courtesy of the much-maligned Affordable Care Act, a new website is now online that allows patients to enter their doctors' name, click a button, and discover just what pharmaceutical company payments their physicians received in 2013 (click here). I just entered the name of one of my physicians and came up with four pages of pharmaceutical company payments to him, most for “food and beverage” expenditures. It sure is nice to know that he and his staff are well fed.
Let me be clear, I genuinely like this doctor, but the fact that pharmaceutical companies are legally allowed to engage in this kind of crap makes me want to vomit in my mouth. Perhaps if we all print out the info we get from this website and present it to our physicians, along with some pointed questions, our esteemed doctors may think twice about engaging in such activities. Whoops, there I go, crossing over into yet another parallel universe. Silly me.
♦ Okay, now that this blog post is threatening to rival the length of Webster’s Unabridged, I’ll mercifully bring it to a close. As has become my tradition (and I really do enjoy creating my own traditions) I’ll end this edition of Bits and Pieces with a music video by an artist in the “retro-soul/neo-soul” genre. This time around I present you with Sharon Jones, a sublime belter who simply oozes all of the innumerable and unquantifiable qualities that define the notions of funk and soul. This video dates back to 2007, so I guess it’s kind of old at this point, but Sharon Jones is still going strong and deserves as much attention as she can get. Though the video looks like it was made in the 1960s, trust me, it’s a product of the 21st century, although it was shot with vintage TV cameras that its producers bought on eBay for about 50 bucks. So get ready all you cuties to shake your booties to the infectious sounds of Sharon Jones and the Dap-Kings, a righteous, mighteous, and out of sighteous infection for which I want no vaccination! Bring it on…
Marc- I just wanted to throw in there- I completely agree with you about Big Pharma and the debatable ethics of "gifts" to providers. I am a Family Nurse Practitioner and MS patient, and I want to let you know that one system that strictly forbids this practice is Kaiser Permanente. There are no speakers fees, no salespeople allowed on hospital premises whatsoever. The VA system does not allow the practice either. These two major (largest in the nation) health systems are forward thinking, and this needs to be the standard across the world.ReplyDelete
Thanks so much for your comment, it's good to know that there are efforts underway to stamp out the practice of Pharma to doctor payments. I couldn't agree more that this needs to be the worldwide standard.Delete
As a former oncology nurse, I am familiar with Campath and this drug scares me. You can say that it has been used in treatment for blood cancer for years, but you may not know is that it is not used often and the practice I worked for stopped giving it in our usual outpatient clinic because of severe infusion reactions. There were even deaths, although that did not happen at our facility. I treated several patients with the drug and the infusion reactions were significant. The dosage and frequency of treatment is likely very different for MS, but I have seen what it can do and it is definitely a big gun that should be used very carefully.ReplyDelete
You mention the information about the gut and MS, which I find very fascinating. The membrane that separates the contents of our bowels and out blood supply is one cell thick. Proteins need to be broken down into amino acids to be able to cross the membrane, unless there is something that increases the permeability of the membrane, and then whole proteins can cross the barrier. Our immune system is at the ready on the other side of the membrane to protect the body from foreign substances that could be harmful. If our immune system sees a whole protein, it mounts an inflammatory response. Interestingly, there is a prolamine that can easily cross the membrane in the presence of increased permeability, and that prolamine is called gluten. There is mounting evidence that eliminating gluten from the diet can have a therapeutic effect for patients with MS. It troubles me that people will consider treatment with big guns like Campath (andTysabri) when something as simple (not easy) as removing gluten from the diet can have a profound effect. I have had RRMS for over 20 years and I removed gluten from my diet 8 years ago. Since that time, my MRI has been stable. I understand that this is one person's anecdotal evidence, but there are increasing numbers of people having similar results. I removed dairy 6 months ago because there is increasing evidence that those sensitive to gluten are also sensitive to milk protein. This is not just a fad, although there is lots of faddish information and recommendations out there. I recommend Sarah Ballantyne PHD (medical biophysics) as a source for discovering the hard science behind diet and autoimmune disease.
Thank you for your valuable input into Campath and infusion reactions. I thought them so important that I placed them in the body of this post, with proper credit given, of course.Delete
Very happy to hear that altering your diet has improved your symptoms. I tried cutting out all glutens and dairy, but found it didn't make a difference in my symptoms or disease progression. Diet does seem to play a role in the disease of many patients, though, and should be considered by all concerned MS patients.
You serve us all by sharing such vital information, and you do it with grace, humor and compassion. Thank you.Delete
I just added a link to the above Lemtrada information that is quite important for those concerned about Lemtrada infusion reactions. The link goes to a recent post on the Multiple Sclerosis Research Blog that directly addresses the issue. Very pertinent info…Delete
Taking the Risk Out Of Lemtrada
Very good - thanks for finding it!Delete
Thanks for the funkious wonderfulness of Sharon Jones!ReplyDelete
You are very funkily welcome.Delete
Oh good, I was hoping for a post from you on Lemtrada and I was counting on a post from you with some more great music!ReplyDelete
Very glad I didn't disappoint… Thanks for commenting.Delete
Hi Marc, thanks for writing a very interesting and informative post. Your videos were touching and entertaining, so thank you. I have to tell you about this book I'm currently reading, Healing and Recovery, by David Hawkins, MD, PHD. It's about ways to heal yourself with the power of your mind, it is an awesome book, please check it out. I also just found this other book I'm gonna order from amazons, Your inner Pharmacy by Dr R Blaich about whole food needed to nourish the body. I also am reading the emotion code by dr Bradley Nelson, who writes about trapped energy causing physical illnesses. So I'm searching for healing too, but the most interesting thing I've discovered it illness does not exist in a vibration above 540, so that is my ultimate goal. You can read a out the levels of consciousness in the first book I mentioned. Hang in there!ReplyDelete
Thanks for the recommended reads, I will definitely check them out. There certainly is much that needs to be learned, and the mind can be a powerful tool both for better and worse. Glad you enjoyed the post.Delete
One of the first things I did when I was diagnosed with RRMS in 2010 was consider making some changes to my diet. I did so gradually, and honestly trusted my "gut" (pun intended) to tell me what I should and should not be eating. I am astounded really, by how much of a connection there appears to be between how my MS behaves and what I am consuming. I continue to learn to listen to my body's requests and when I honor them I get the reward of a happier me.
I am pretty disappointed in what seems to be standard practice in the pharmaceutical industry. My monthly supply of the DMD I take would not be affordable if I didn't have insurance. The cost has gone up a full $1,000 in the past year. I know how much it costs, because the receipt shows how much my health plan "saves" me. Who is raking in all that cash - and why is it so out of control?
Don't worry about the length of your posts. I'm thinking you might want to consider a book though. I'd buy it. Put lots of your photographs in it and talk about living in New York and why you live there and...... well, something like that.
Oh, and how about posting somewhere a list of your favorite tunes? :-)
Hi, sounds like you are on the right track in regards to altering your diet to "fit" your MS. I don't think there is a one-size-fits-all approach when it comes to diet and MS. Certainly, folks with celiac disease should avoid glutens, but even those who don't have celiac may still be sensitive to wheat products. Then again, many people who are fastidiously avoiding wheat are probably wasting their time. Every individual needs to figure out what works best for them. I'm personally going for the "everything in moderation" approach at this point. Not going to deprive myself of foods I crave and desire, but won't overindulge in foods that I know could be problematic.Delete
As for where all of that pharmaceutical profit goes, well, most of it goes into the pockets of the pharmaceutical companies. Yes, they spend a lot of money on research and development, but they are making literally billions and billions of dollars on the multiple sclerosis drugs, I'm sure recovering whatever R&D costs were incurred within the first few years after the drugs' release. Did you know that all drugs are more expensive here in the US than they are anyplace else in the world? Why you may ask? Because the United States is one of the only countries that doesn't put any kind of price controls on drugs, and simply lets the market decide. Unfortunately, since all of the MS drugs are mysteriously (not) priced just about the same, there is no market pressure to lower the cost of these medicines. Hey, I'm all for capitalism, and there's nothing wrong with people making money, but at some point a certain amount of sanity is called for, especially when the drugs in question don't do a thing at all towards curing the disease.
Thanks for your thoughts on my publishing a book. Who knows, maybe someday… I'm afraid a list of my favorite tunes would reveal me to be quite schizophrenic. My musical tastes are all over the place, and a list of my favorite tunes might be longer than some of my epic blog posts!
I was just reading your posts on life with MS and other things. I really appreciate your perspective. As I read, I could not help thinking about a project that my kids are involved in.ReplyDelete
We have a neighbor who has had MS since she was about 23 years old. She raised 2 kids while in a wheelchair and living in a old not wheelchair friendly house. Her husband Randy is ALWAYS doing something nice for people. He has helped us on numerous occasions in between ranching, working full-time and caring for his wife and ailing father.
I know you guys are busy, and it is a long shot but, I just wondered if you could take a moment to watch a movie my 14 year old niece made in an effort to help raise funds to get Sam a new house. We would love your feedback and any help in helping us reach this goal.
Thank-you in advance,
Hi Naomi, I did watch the video, and found it quite touching. Big kudos to you and your kids for helping your neighbor.Delete
I feel a bit torn, because as much as I'd like to help trumpet Sam's cause, I simply can't because I get so many similar requests. If I agreed to all of them, this blog would pretty much consist of nothing but fundraising efforts. So I'm forced to take kind of an all or nothing approach, especially when it comes to personal appeals like this. I hope you can understand my predicament, and not think me a callous bastard.
I would urge all who read this to follow the link Naomi provided, though…
Sending my best wishes to Sam and her family, and a big thank you to you and your family for being there for her…
I want to thank you so much for everything you do. Having recently been diagnosed with RRMS, I do not think I would get through the emotional trauma without the assistance of this blog. Your writing is so raw, thought-provoking and beautiful. Moreover, it is based on fact, much of which big pharma and others try to hide under the rug. Change will only come when these things are brought to the surface, so kudos to you for making such a monumental difference and exposing millions to transparent data.
One question I did have for you - as I did not see it discussed in any of your archived posts - is your opinion of IVIG therapy. My neuro (an MS specialist) suggested this therapy for me for the constant and intense burning in my legs (in addition to my MS, there is evidence to support I have some sort of autonomic dysfunction - whether or not this is directly caused by my MS or is its own separate beast, is very unclear to my team of specialists). Like many, I am terrified of many of the MS drugs - or any drugs for that matter - on the market. IVIG however, seems to be a much safer, more holistic and outside-of-the-box therapy. Currently, it is used off-label for MS (including for pregnant women with MS that have a relapse during pregnancy [and I really like the fact that it is deemed safe enough to give to pregnant women]). Of course, this is not to say it is risk free or that it will improve my symptoms. Like everyone, I just want a remedy - something to get to the ROOT of the problem - and not all these ridiculous and dangerous "band-aids" being prescribed to us MSers. Even more so, I want to find something to help with all the burning pain.
Thanks again, Marc.
Lindsay, I know that you asked Marc this question and not me; however, as a former oncology nurse and one who has a healthy respect for these powerful medications, I think IVIG would be a good and safe choice in your situation. I have given IVIG to many patients and it does not scare me. I hesitate to say anything that could be considered medical advice ... please understand that this is simply my opinion and the result of what I have seen and experienced in treatment situations. Marc, if you feel the need to delete my comment, I understand.Delete
Hi Lindsay, just so happens that I've done two courses of IVIG. The first time around I saw some significant improvement, which unfortunately proved to be only temporary. I stopped the IVIG infusions because I started getting flulike symptoms for about a week after each infusion, and when I stopped seeing any benefit it just didn't seem worth it. Tried again about a year later, but this time around didn't experience any improvements.Delete
My neurologist uses IVIG fairly frequently on his MS patients. I think the stuff seems to work best on folks who show some signs of systemic autoimmune activity. At any rate, it certainly worth a try, as long as your insurance company will approve it. The stuff is very, very expensive.
Mary Beth, please feel free to contribute to the blog. I don't think anything you've written so far has been inappropriate, and in fact your input has been quite valuable. Thanks.
Thank you so much for your input! It means a lot coming from a former nurse with actual experience with it (and no worries - I know you are not providing medical advice). I know IVIG is used for so many things. My friend has Lupus and also had an acute attack of Guillian Barre and has been doing IVIG for years. While her condition is a far cry from mine, she credits her ability to even get out of bed to her monthly IVIG infusions. In addition to IVIG, my neuro has suggested other things such as Rituxan or Ocrelizumab (if approved in 2015) that target the b-cells, but - albeit longer lasting than IVIG - I am too scared of these powerful biologics at this point in time. Thanks again so very much for your input. The sense of community on this site is truly remarkable.
Lindsay, I have a friend, a 30 something mother of 2 boys who was given Rituxan for MS and she developed a very serious case of colitis. This does not happen often, but according to the literature, there were 2 other patients who needed to have their colons removed because their reaction was so bad. I find this particularly distressing because Rituxan is my most favorite oncology drug of all time ... I have seen it do wonders in many patients. Messing with the immune system is very risky business. They are not sure why this happened to the MS patients, but one doctor theorized that the CD 20 antigen which is targeted by Rituxan and is over produced in some blood cancers, may be protective in the gut. Yikes ... we are back to the gut again.Delete
Believe it or not, Lindsay, I also tried Rituxan. Didn't see any positive results. As you note, the drug targets B cells, and its effectiveness has changed the way many neurologists view MS. Up until several years ago, MS was thought to be a strictly T cell mediated disease, but the success of Rituxan has proven otherwise. Interestingly, some doctors believe that the real power of Rituxan when treating MS lies in the fact that these cells harbor the Epstein-Barr virus within the human body, and by eliminating B cells (which is the mechanism of Rituxan) you effectively rid the body of most of its EBV viral load. EBV has long been thought to be a culprit in the MS disease process, so this line of thinking is quite intriguing…Delete
Wow - that is some really scary stuff. We take a drug to try and help one thing only to need another drug (or surgery) to help with the side effects of that drug. It is a viscous cycle and incredibly profitable for big pharma.ReplyDelete
So, it doesn't sound like it, but did you see any major side effects with IVIG? Did you know if any of the oncology patients you treated with IVIG also had MS? Lastly, have you heard of IVIG making patients feel worse before they feel better? Again, I know you are not providing medical advice, rather just sharing your experiences with this therapy. I really appreciate it.
Lindsay, I replied to your question because I was concerned that my previous comment about Campath / Lemstrada may have scared you away from all treatment options. If you Google IVIG and side effects you will learn what you need to know. If you have additional questions, you may private message me on Facebook :) Mary BethDelete
Lindsay, it's important to keep in mind that every drug has side effects, aspirin included. When it comes to these MS medications, every patient needs to do their own risk/reward calculations. Lemtrada/Campath does have a concerning side effect profile, however, the potential benefits patients may see as a result of taking the drug can be dramatic. It's also important to remember that, for many patients, MS is far from a benign disease, and doing nothing really shouldn't be an option. What we really need are some tests that can identify patients most at risk for aggressive progression, so that these stronger and potentially more dangerous drugs could be targeted at the patients who need them most. I know that researchers are working hard in this regard, so hopefully we will see results sooner rather than later.Delete
To echo from the above, thank you for your wit, brutal honesty, research, long posts, and inpiring photos of the park. Diagnosed two years ago, with lesions eating my brain for apparently 30 years, I'm still and might always be, reeling. Your spirit flows off the screen, thanks for sharing it.
Hi Tom, thanks for your very kind words, and I hope my spirit flowing off the screen didn't make a mess of your computer. Hate when that happens!Delete
Marc, another great post. A few questions - Are you involved in the Tisch MSC trials? If not, have you heard anything either postive or negative as to how this is going? Also, I realize you had CCSVI treatment with Dr Sclafani several years ago without much success. Have you considered revisiting this now that he has gained more expertise?ReplyDelete
Love the Sharon Jones video - like you I really enjoy soul & r&b. Have you seen 'Get On Up?' - great flick. Also, if you've never seen the TAMI show, do try and watch it. I saw this when it first came out (1964!), and it still blows me away.