Betaseron

I distinctly remember reading this article in the NY Times. My hands already hurt from what I suspected was RA yet to be diagnosed, and I felt utterly defeated. Our neighbors kids were visiting for the summer, and they were outside. I could see them out the window to the left of where I sat at my computer. I had the flash of walking upstairs to get my pistol, out into the yard (don’t make a mess inside), and killing myself. I thought that would be a rather rude thing to do to those kids so I sat glued to my chair. That was my exact thought process.

I followed the development of Betaseron after I was diagnosed in 1991, and Bob, my neurologist, was able to get me onto the protocol before it was approved by the FDA. I had been injecting that drug since somewhere in 1992, I believe, as it was finally approved in 1993. I remember arguing with my insurance company at that time about them not covering it because it wasn’t yet approved although it soon would be.

The side effects were horrific. I had a headache for over the first year I injected. I had several very bad site reactions over the years which caused open wounds on my midriff and legs and resulted in deep scarring. My butt is nonexistent from necrosis. My legs are a patchwork of discolored tissue. I could go on with gruesome descriptions, but let’s face it, these injectable drugs were never meant to be injected for this long. That just was not part of the thought process that went into their development.

That article, to me, meant that I had been injecting this drug for the past 20+ years for nothing. “Multiple Sclerosis Drug Doesn’t Prevent Onset of Disability, Study Finds.” So why exactly are we injecting it if it doesn’t do what it claimed originally to do—slow the onset of disability? I asked this question of my neurologist, and she said people really didn’t know what was going on or how it worked. Yes, I understand that; it is what they stated in the article, but the original paper said that it delayed the onset of disability which is why I started injecting it. The papers which appeared in the journal Neurology looked so promising. I read them in the hospital library as the science library at the University did not carry the journals I required.

MS is thought to be many different diseases. We have primary progressive, relapsing-remitting, etc. I don’t recall there being all those distinctions when I was diagnosed. It was just MS. I looked at it as a slope of a line with the y-axis being disability and the x-axis being time. Sure my scientific mind knew there must be a genetic component and an environmental trigger, hence my question at the Jimmy Heuga Center, but I believed that MS was the same disease, the slope of your personal line is what was different—the steeper the line, the faster the onset of disability. How can we flatten out that line, become stable, go into remission? (Because of my dealing with functional medicine since summer 2012 and watching Cordain’s talk on MS, I now realize that a lot has to do with what your diet consists of, as well.)

Betaseron was the first drug to be approved for MS. A flood of others came afterwards, but I read all the scientific papers, every single one, and none of them presented any better data. In fact most were just enough different to be approved by the FDA. Betaseron was injected subcutaneously-another intramuscularly. Betaseron was injected every other day—another every 3 days. These minor distinctions were enough for FDA approval. Yet another release, they reduced the drug dose enough so people didn’t have side effects. Great, but is it still efficacious? Who knew. In any case, I remained unimpressed by all of the therapies that came subsequently. I stuck with Betaseron.

Through my mind at this point, after reading that article, was “If I thought Betaseron was the best option, and now we’re being told, point blank, it doesn’t do what it claimed…exactly what does that mean for all the other MS therapies out there?” Because all the therapies at that point had been based on Betaseron, to me, it did not bode well.

Now we were at the point of “do you believe in what you are doing?” I can’t repeat enough the power of the mind on health and well-being. If I no longer believe in this therapy, I might as well being injecting saline. But I’ve been doing this for over 20 years. Do I know how to stop? Over the next 6 months or so I found myself “forgetting” to inject. I knew what I was doing, but I couldn’t voice it. I couldn’t even tell my partner.

I had dental surgery in June 13, 2013 and found it a convenient time to stop injecting altogether; it had been almost a year since I read that article in the NY Times. I’d been also been paleo just short of a year at that time. I read that article on July 17, 2012 and went paleo on August 1 2012. I was feeling better than I had in years; I spoke to my functional med MD about ceasing to inject. She supported the decision. I had just switched neurologists (my previous one had relocated out of the area), so I didn’t feel like going in and explaining my decision at that point.

And now it’s March 2014, and I’m remyelinating, growing new nerve pathways, repairing old ones, or however one wishes to explain the biology. I know this because I have been walking without my WalkAide which I’ve worn since May 2012. My functional medicine doc DID believe I’d have more evidence for my neurologist next time I saw her…

4 thoughts on “Betaseron

  1. Are you saying that none of the current drugs make any difference? Are people who depend only on medicine (not diet) no better off then they were 50 years ago? I know it is a very small sample, but the two people (my aunt and a neighbor) I knew who were diagnosed with MS in the 1960’s died miserable deaths within a few years of diagnosis. I assumed the people I know now with MS are living longer more functional lives because of modern medicine. Do they really just have a different form of the disease than my aunt and Mrs. Ziggenhart?

  2. In short, no, that’s not what I am saying. I know that they would not make any difference for me, personally. I don’t believe the science; therefore, my brain doesn’t believe that using them would make any difference. I cannot speak for anyone else. If you believe something is working for you, it is likely having a positive impact. As far as your sample of 2, from the 60s, one would need to see their medical records in order to compare them with any other individual diagnosed with MS. “A few years” is a speedy descent; possibly there were complicating factors. I would really like to believe that we are better off now than we were. There are also drugs available not based on Betaseron. My neurologist used to call me the poster child for Betaseron because “how well” I was doing on it. I know I certainly believed in it when I was injecting it. Biologically speaking, however, was it ameliorating the disease? Who knows, but we now know it certainly wasn’t doing what the developers of the drug thought it was.

  3. I guess that goes to show how a small sample really skews what you think you know. I do not know of any complications for my aunt who was diagnosed in her late 30’s and died within 3 years. It is possible that my neighbor initially hid her diagnosis but she also died around the age of 40.

    • There is no doubt that the diagnosis and treatment of disease including MS has changed significantly since the 60s. One may also ask how MS differs between those afflicted which is an entirely different tangent–or is the disease that I have the same as that of your aunt? your neighbor? Again, we’d have to compare medical records for medical science to attempt to decide, but I’d hazard a guess that it has more to do with our genetics, what we consumed, what we were exposed to environmentally, how we approached the disease, how our providers approached/treated the disease etc. MS, and many other disease states, may just be a name that medical science gives to a group of particular symptoms. The underlying cause or trigger may be very different which may give rise to very different outcomes. For instance, see the just-published book by Dr. Terry Wahls, The Wahls Protocol: How I Beat Progressive MS Using Paleo Principles and Functional Medicine. Does Terry Wahls share the same disease with me? with your neighbor and aunt? Fascinating questions to which I truly hope we eventually find the answers.

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