Monday, May 28, 2012

MS drugs and reality

This question came in a comment to a recent post. My answer is long enough to need a post of its own.

From: Saving Sylvia Plath

I am curious - do you ever think that your MS might not have progressed to SPMS had you taken a DMD? I recognize that many folks fail on some of the drugs, the interferon drugs are notoriously brutal. Why not Copaxone? Why not LDN? Anyway - I do like your blog and think you've got a fantastic writing voice - just wondering if those little doubts about not taking the drugs ever creep in
I assume that by DMD you mean disease-modifying drug, not a term that's used much here in the US. Here, injectables such as Betaseron and Tysabri are usually referred to as immuno-modulatory drugs.

I've tried most of them--Betaseron, Copaxone, Rebif--plus one immuno-suppressive, Novantrone.

All of them except Copaxone made me unwell--the Novantrone very much so, with the bonus of extreme weight loss, total crash of blood counts (with attendant rescue shots which made my marrow swell: pain you wouldn't believe), and loss of taste for over a year. Copaxone didn't make me ill, but it gave me unpleasant injection-site reactions. Even twelve years later there are chunks missing from my belly, arms, thighs, etc. where the adipose tissue is ruined. More to the point, Copaxone didn't stop me progressing from relapsing-remitting MS (RMS) to secondary-progressive MS (SPMS).

I'm now on LDN and have been for four years. (I've talked about this here here.)

Now I'm paying attention to my diet. I keep promising to talk about it, and I will, but to reduce the last few years' thinking to a single blog post is daunting; I keep putting it off.

For now, in sum: no, I don't believe DMD would have changed anything for me, because they're interrupting the wrong part of the MS cycle. I've fixed my diet, and now I want something--a perfectly tailored statin or fibrate or something yet-to-be-discovered--that will correct my lipid metabolism. Meanwhile I'm doing my best to keep in balance what I can while I wait for science to catch up to what is now known to be known about MS.

I watch so many people get diagnosed with MS, get prescribed these vile drugs and go through the agonies of the damned. And for most people, most of the time, they don't work. For example, here's the conclusion of the Cochrane study on Copaxone: "The data showed no beneficial effects on disease progression in both MS forms, a slight beneficial effect in the reduction of risk of relapses in RRMS patients and no benefits in PMS patients." For many of us, the drugs are actively harmful. And they cost a fortune. We take them, we keep trying to take them, despite the pain, unpleasantness, uselessness, and expense because we are pressured into them by our medical advisors, who tell us if we don't we'll end up crippled and it'll be all our fault. By our family and friends, who say, Yes, I know it hurts, but What If... And by the endless advertising in MS publications.

I don't take DMDs because, in my experience, I think they suck. Instead, I've modified my diet and I take an inexpensive (less than $40 a month), off-label oral medication that has improved my quality of life beyond measure. Do I still have MS? Oh, yes. There's no magic cure--though now, I believe, for those in the very early stages there is prevention.
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