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Faithful readers of this blog know that I like to regularly share various news items that I find interesting or otherwise tickle my fancy, most of which have at least some peripheral relationship to Multiple Sclerosis. Here's another such collection, along with some commentary. This compilation includes items that range from the extremely serious to the extremely silly, which more or less reflects the real life balance needed to maintain one's sanity. Even though we're dealing with a serious illness, we don't need to be serious about it all the time. In any event, I'll try to put these in some semblance of order, in descending rank from serious to silly…
- "Multiple Sclerosis Will Become a Controlled Disease like AIDS" screams the headline of this article (click here), which talks about some of the breakthroughs that geneticists have made in identifying genes associated with MS. While these discoveries are both encouraging and fascinating, transforming MS into a controlled disease falls far short of the expectations and wishes of those afflicted with the illness. While controlling MS is certainly preferable to just letting the disease run rampant through our brains and spines, it sure would be nice to see the scientific bar raised a bit, to include at least a cursory mention of the possibility of a cure.
As anybody knows who lived through the scourge of AIDS in the 1980s and 90s, a time when people were being buried at a tragic and distressing rate, the fact that AIDS is now for the most part controllable by means of a cocktail of strong antiviral medications is definitely a huge relief. Certainly, the hunt for a cure for the disease hasn't been abandoned, but you can't help but think that the fact that the disease is now considered controllable has lowered the urgency of that endeavor. I'd hate to see the same situation arise for MS, but in reality, I suppose it already has.
The advent of disease modifying drugs that do nothing to address the still mysterious root cause of MS, but which have been a tremendous financial boon to the pharmaceutical industry, has almost certainly dampened research efforts to hunt for the genesis of the disease. The fact that these drugs are tremendously expensive and must be taken for the life of the patient has turned MS into a multibillion dollar a year windfall for pharmaceutical companies. Since these companies fund over 70% of the medical research done in this country, and they are public companies whose mission is to constantly increase profits, their money flows towards research that shows the potential for tremendous financial return, which most often takes the form of blockbuster immunosuppressive or immunomodulating drugs.
Many neurologists have expressed genuine shock over the tremendous emotional embrace given by the MS patient population to the CCSVI hypothesis and the Liberation Procedure used to address it. This surprise on the part of the physicians exposes a serious disconnect between MS Neuros and their patients. MS sufferers innately know that the sometimes extremely toxic drugs they are being given will in no way free them from their disease. They may improve a patient's quality of life by cutting down on MS relapses, but they do nothing to slay the enemy within. Since CCSVI apparently offers at least the hope of a cure, patients have latched onto the theory like shipwreck survivors grasping at life preservers. Regardless of the ultimate outcome of the CCSVI debate, hopefully the patient-doctor dynamic has forever been altered, and even if CCSVI turns out to be less than we now hope it will be, patient driven initiatives will help jumpstart the search for a cure.
- Speaking of disease modifying drugs, the FDA has approved the first oral treatment for RRMS. Developed by the pharmaceutical company Novartis, the drug is called Gilenya, formerly known as Fingolimod or FTY 720. This is the first MS Disease Modifying Drug that doesn't require injections or intravenous infusions (click here for info).
Hooray, right? No more sticking yourself with needles, or spending several hours a month in an infusion suite, what could be bad about that? Well, unfortunately, potentially quite a bit.
During trials, Gilenya was found to increase the chances of developing severe, sometimes fatal infections, as well as an increased propensity for melanoma, a deadly skin cancer. In addition, there was some association of the drug with adverse vascular events, macular degeneration, and the possibility of lymphoma.
On the plus side, Gilenya does dramatically decrease the relapse rates of patients taking it, and also dramatically cuts down on the number of enhancing lesions seen during MRI imaging. There is also some evidence that the drug may be neuroprotective, one of the holy grails of MS research, and for that reason it's currently being trialed on PPMS patients, for whom there are no approved, or even unapproved, treatments. Gilenya may also slow disease progression, another holy grail of MS research.
I find the mechanism of the drug somewhat troubling, though. Like Tysabri, Gilenya inhibits the ability of immune system T cells to gain entrance to the Central Nervous System, where they significantly contribute to the CNS damage seen in MS patients. While Tysabri accomplishes this by blocking T cells from crossing through the blood brain barrier that separates the Central Nervous System from the rest of the body, Gilenya keeps T cells trapped in the lymphatic system, not only restricting their access the CNS, but to the rest of the body as well. In effect, Tysabri keeps the cops out of one specific neighborhood, but Gilenya keeps them trapped in the police station. Since the compound was only trialed for two years, no one can say for sure what the long-term effects of so profoundly altering our delicately balanced immune systems might be. Sounds like many doctors are going to be cautious about this drug, at least at first (click here for info).
On an interesting side note, Gilenya is derived from an ancient Chinese herbal remedy called Cordyceps, which is a fungus that grows on the back of caterpillars, and is purported to have many medicinal properties, including those of an aphrodisiac. It's also supposed to increase blood flow and oxygen supplies throughout the body (possible CCSVI implications?) (click here for info). Cordyceps is available through online vitamin and herbal supplement retailers (click here), but I'm not sure what alterations were made to the compound when Novartis synthesized and patented it. Strangely enough, Cordyceps in its raw form is known to increase the activity of the immune system, but some MS patients do report it helps their MS fatigue.
- In yet more drug news, the FDA has approved Nuedexta (click here for info), the first drug designed to combat "emotional incontinence", otherwise known as the pseudo-bulbar affect (click here for info). Some MS and ALS patients suffer from a very strange symptom: the inability to control their emotions, which often leads to inappropriate fits of laughing and crying. I must admit, I do get awfully weepy at some movies, and have even been known to cry at commercials, but these reactions predate the onset of my MS. Throw "Casablanca" in the DVD player, and I'm apt to start crying from beginning to end. What can I say? I'm hopelessly smitten with Ingrid Bergman, and when Humphrey Bogart makes the ultimate sacrifice, letting the love of his life, once lost but then found, fly off with another man in the name of a greater cause, well, pass me the tissues, and they'd better be two ply…
- It appears that a slightly bonkers British chap has eclipsed me as a real Wheelchair Kamikaze. Seems this bloke has attached a gasoline engine to a standard mobility scooter, and reached speeds approaching 70 mph (click here). Hey, my hats off to him, and I heartily applaud his efforts. Wait a second, since he's using a scooter, I guess I can still hold onto my Internet moniker. He's the Scooter Kamikaze. And, in keeping with mobility device kamikaze tradition, he made a pretty cool video of his exploits…
- And in news that has nothing at all to do with MS, it seems that a time traveler has been caught in a 1928 film starring Charlie Chaplin. In the background of a scene in the Chaplin film "The Circus", it appears that a woman walks by apparently talking into a cell phone. Of course, cell phones weren't invented back in 1928, so her actions are quite mysterious. I love the idea of time travel, and if one day I seem to simply disappear, look for me back in 1935, dancing a mean jitterbug at The Savoy Ballroom in Harlem, burning my shoe leather to some big band version of Fats Waller's "This Joint Is Jumping". I'm assuming, of course, that traveling back in time would cure my MS. Anyway, here's a piece from the Chaplin film, showing the alleged time traveler…
I smile when I see your blog pop up in my inbox. Thanks for a bright spot in my day.ReplyDelete
Ditto. I was excited to see a long post and stopped to make a cup of tea to go with it. Very informative and entertaining. And pertinent as I am supposed to be choosing between Gilenya and Tysabri for my next therapy. Neither of which I am excited about but I'm feeling a leaning toward the Tysabri. If I choose one at all. Or maybe I'll just track down the fungus and try it on my own. Not really. I'm much more interested in preserving what I've got and seems lots of supplements, exercise, and good diet really do help with brain health. This article about brain regeneration was encouragingReplyDelete
and much more attractive than the drugs out there. Thanks for the tea time!
again a post well done. Thank you four your introspection, insights and of course the humor.
And from one time traveler to another: "I'll meet you at the Savoy for a dance, right before going "where noone has gone before."
Be well my friend, it is a pleasure to know you.
Ellie in WI
Your posts are the source of inspiration and they stimulate to think outside the box. Thanks for that.
I wonder how we can keep CCSVI off from becoming a "political" or "commercial" movement?
Could you comment on these two:
Thanks in advance,
"Speaking of disease modifying drugs, the FDA has approved the first oral treatment for RRMS."ReplyDelete
Well, obviously his is not the first oral treatment for (RR)MS.
There is one clear similarity between MS and AIDS: low dose naltrexone is the most effective treatment for both. It puzzles me that someone would still start MS treatment with something else.
What I find immensely sad is how the research in autoimmune diseases _still_ foxuses on immunosuppressants, not immunostimulants. Treating autoimmunity with immunosuppressants is irrational and dangerous. It won't take long until it will be widely viewed in the same way as lobotomy is now.
Kathy here...What is your take on ACT..Advanced Cell Training? Someone I know swears by it & claims that it has helped her fibro. I am a little skeptical of it myself. I read your blog weekly and find it very informative on all topics. What is your opinion of it?ReplyDelete
I enjoyed that!! ThanksReplyDelete