I’ll just state from the outset that I know I have some readers who are taking MS meds and they don’t question their decision. I greatly envy their self-assuredness in doing so and my intention is not to convince them otherwise. Rather, I’m exploring this and maybe trying to convince myself of the evidence for what I already believe deep down.
As I mentioned yesterday, my current med doesn’t seem to be working out, though I’m going to ride it out for longer and see if I adjust. The only side effect I won’t be able to live with is increased depression and anxiety, which is such a likely side effect that the drug should only be used with caution in those with an existing history of depression. But considering that my husband starts a new regimen of chemo later this week that he’s supposed to be on for three years, I have a lot of reasons to feel anxious and depressed right now.
At the same time, all my other med choices have so many risks that I’m unwilling or unable to accept that I’ve tentatively decided that if this one doesn’t work, I’m probably done with MS meds. Not because I have more faith in a natural route, just that I’d rather take my chances with the disease than with the meds. So I’ve been doing some research to try to find out what’s likely to happen if I don’t take meds.
First off, the odds are on my side. About 75 percent of people with MS never need a wheelchair. The article does recommend taking meds, of course, as most medical sources do. But my EDSS score is pretty low, which measures my degree of disability. I need to ask my neurologist at my next visit for the exact score but I’d put myself at a 2.5.
I’m progressing slowly, as I think I’ve only progressed by .5 since I was diagnosed seven years ago (all but 8 months of which I was unmedicated.) From my first symptoms when I was still undiagnosed, I estimate that I’ve had MS for almost 20 years. I also don’t have frequent relapses. Between the length of time I believe I’ve had it and not having frequent relapses, being secondary progressive is more likely and drugs don’t help secondary progressive as much anyway.
If I’ve had MS for 20 years, the large number of lesions I have makes sense. And being at a 2.5 EDSS score means that if I continue progressing at a similar rate, I could have another 20 years until I need to permanently walk with a cane.
The thing that’s scary about MS which is the strongest selling point for the meds is that the disease course is so unknown. I’ve spent hours researching medical journals in order to see if there’s any way to predict outcomes…and there really isn’t.
If you take the drugs and you get worse, you don’t know if you would have gotten even worse without them. If you don’t take the drugs and you get worse, you don’t know if you could’ve avoided getting worse if you had taken them.
Everyone with MS (including me) is afraid of becoming like Annette Funicello, completely incapable of caring for themselves. Of course, it’s also to be noted that she had a highly active and progressive form of the disease, which I do not, and she also had access to all the best medical treatments. And in a weird way, she kind of proves my point: if you’re going to get that bad, you’re going to get that bad, even if you take meds.
The FB groups I’m part of are full of people taking meds whose disability is still progressing even while on the meds – even though their MRIs are often good, so the treatment is considered successful. That makes me feel like MRIs are not the most accurate way to measure MS. In truth, I don’t think the medical community understands what causes MS and most of them will admit that. The meds are often a shot in the dark, no pun intended.
While trying to rest last night, I happened to wonder about the cost effectiveness of the MS drugs (which run up to $80,000 a year or more) compared to the number of relapses they prevent. And it turns out there are studies on that, the results of which aren’t encouraging. The drug I’m on right now, for example, costs the most in terms of the amount of benefit you get from it, called “quality of life years”: over $355,000 for one quality of life year. By comparison, the average relapse costs $9,000 to treat, according to the same source.
Of course, when you’re dealing with an unpredictable illness that has the potential to be completely debilitating, even if those really bad cases are the significant minority, it can’t come down to a cost decision. Those who are doing well on meds shouldn’t be forced off of them because of a low cost/benefit ratio.
What I’m left wondering for myself, though, is what the benefits of the drugs actually are. As far as I know, they only hope to result in better MRI results and slower progression of disability. But as mentioned above, MRIs seem irrelevant to how well you’re actually doing and I don’t think they’re a good measure of anything. My MRIs are terrible and show a ton of inactive brain lesions but my disease is not aggressive. And you can still have disability progression even on the meds and many people do. I just don’t think anyone really understands how this disease works.
But what it increasingly comes down to for me is that the drugs seem to offer so little proven benefit compared to their potential risks. If they could cure me or promise that I’d never get worse if I take them, I would find that a more compelling reason to take the potential risks.