I received a comment from "Enjolez" who is listed as having a blog but when you click on the link, it's non existent. The comment used explictives and suggested I didn't know what I was talking about when I wrote about the Multiple Sclerosis "disease modifying" medications, particularly a cancer chemo therapy drug named Tysabri which can cross the blood-brain barrier and cause a deadly type of brain infection called "progressive multifocal leukoencepelopathy" which according to the manufacturer of the medication, causes death or "severe disability".
Enjolez didn't mince words - he or she called me a f-king idiot but didn't bring up any facts to refute my claims. Despite the type of comment, I want to answer his or her issues because it's important that he or she (probably having infusions of this medication) has informed consent.
At a recent MS meeting, I was given a colorful brochure produced by Biogen. Biogen didn't mince words about the possible risks however or the fact that Tysabri hasn't been studied for "use longer than 2 years" (that's on the first page of the booklet). Interestingly enough, the gentleman I talked to, representing the company, really believed in the medication - he told me his wife was on it.
However, when the risk of a medication appears greater than the risks of the disease it is used to treat, it may be a smart thing to consider another type of treatment. Treatment with a medication which even the lax FDA approved with difficulty for MS, a disease which if treated properly is mild in most folks for years, sounds a bit to me, like playing "Russian Roulette".
From the "Safety information" tab in the same brochure from biogen we are informed that
Tysabri is not recommended if you have a medical condition that can weaken your immune system.
MS is a condition that can weaken your immune system all by itself because it's an autoimmune disorder and/or autoimmune/lymphocyte B disorder (the jury is still out on this). In other words, by having this drug infused into you, you could be dealing yourself a double whammy so to speak!
Biogen also warns that Tysabri can cause liver damage.
What many people do not know is that the nature of studying the MS disease modifying medications is such that they are typically studied in people who display "white spots" on an MRI of their brains but have not been formally diagnosed with MS yet i.e. they have no symptoms of the disease. Some of those in the studies cohorts never come down with MS!
Also, the white spots on the brain appear long before serious symptoms appear - progressive or intermittent MS is a mild disorder which takes many years to disable.
Back in the old days, people were not diagnosed until they had the clinical symptoms but now with MRI's, we have many cases of folks being diagnosed with some fleeting mild symptoms (one lady I'm thinking of, had some "weakness in the legs" but not enough to stop her from being in college athletics) and the MRI "white spots" and they are told that the sooner they get "on the medications", the better and because they had no real symptoms in the first place, and they "believe in" the medications, they naturally attribute this good feeling to the medications or the fact that they have virtually no symptoms but perhaps this is only because if they DO have MS, it's an early enough case that they would not have symptoms anyway. (We won't even discuss here, the possible ramifications of a "too early" diagnosis, psychologically which by itself is questionable since the person may never come down with active disease!)
In contrast, those who have a lot of clinical symptoms often do not experience the "help" that the early cases experience. One lady I talked to who was on Tysabri because she'd tried the other medications with no help, said she was disgusted with her neurologist because she'd been on Tysabri a year and no change. However, when I told her it was a risky medication, she shrugged her shoulders and said "Who cares?"
This attitude of doom and lack of knowledge of the nature of MS is, I think, what causes many folks with MS to take unnecessary risks.
I'm back from the 1970's before all the new treatments. Back then, the MS society told us that 10 years after diagnosis (from clinical symptoms), most folks with MS were still walking and many were still working. They advocated a healthy lifestyle with moderate exercise and range of motion moves, healthy eating and "some walking, some sitting, some standing and some lying down".
In my own research, I noticed that folks with MS who did the highly experimental medical treatments even like large doses of steroids, tended to have more disability in the long run. In fact, there were even a couple of studies which suggested that!
With today's "disease modifying medications" for MS, they don't promise patients anything as far as less disability but only (perhaps) less MS flare-ups. In the studies of these medications, "flare ups" are decided totally upon "new white spots" showing up on an MRI since those in the cohort have not formally come down with MS yet.
Our son, the medical provider, tells me that the disease modifiers for rheumatoid arthritis work well. These are also, medications which are not without risks, however, none of them have the risk (however rare) of causing a deadly brain infection like Tysabri.
Perhaps the problem with the MS disease modifiers is that they really don't know that much about the cause of MS i.e. they may know more about rheumatoid arthritis than they do about MS.
A favorite internist told me "neurology really don't understand a lot of these things". Well said.
Informed choice is the only way but that includes looking at the research behind the medication or at least just reading the caveats from the manufacturer. I wonder if the person who called me an "idiot" ever did the latter.
If "Enjolez" will write me privately and give me an email address to write him/her at, I will furnish more information about myself.
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