when the cure is worse than the treatment

11Feb15

A few days ago, my biology classes and I talked about cell division, which led into a discussion of cancer. Some students mentioned that, if they had cancer, they’d take “any treatment available” in order to prolong their life.

I didn’t want to belabor the subject, but I mentioned that I’ve experienced some harsh treatments (they know I’ve dealt with benign tumors) and.. sometimes the side effects can be gnarly. I asked them, what if the treatment is worse than the disease itself?

I’m having this struggle right now with MS drugs. This is a tricky situation, because a flare-up can happen randomly, out of our control. Sometimes, a situation that we think is going to flare us up actually doesn’t. I’ve only had one flare-up that I know of (though had some clear previous disease activity on my MRI).

I spent about 7 months off of MS drugs prior to starting Gilenya last week–no disease activity. I do lead an overall healthy lifestyle, which keeps my disease at bay. But a random stressful event could trigger it again, potentially leading to irreversible damage (weakness, vision problems, coordination issues).

So, you’re wondering–why would anyone choose not to take an MS medication, if it helps prevent these scary flareups? (It’s not 100% guaranteed, but clinical studies show a significant reduction in flare-ups.) Massive side-effects. These are toxic drugs. Each drug works a little differently, but in the end, they all reduce the circulating numbers of immune cells (some affect B cells, some affect T cells). That means that, while on the drug, I am more prone to infections (another reason to eat and live healthfully!). But some of them cause major stomach problems (why I can’t take Tecfidera–I was vomiting on even a reduced dose), the one I’m on now has some minor cardiovascular side effects (which I’m hoping I “grow out of”), and many of the rest are injectable (I was taking one of those for quite a while… and then, my skin started reacting adversely to the injections).

And I ask again: is the treatment worse than the disease itself? For someone like me, who is vigilant about symptom and disease management… I often wonder.

But you go and ask any MS practitioner, especially when they take a look at my MRIs, which show moderate disease activity… and they will immediately jump to medicating. And I doubt it’s driven by any financial kickbacks, for those of you who are conspiracy-driven.

Now and then, I’d love for the health care folks to walk a mile in my shoes… because even on the days that I feel fine and not affected by drug side effects, it’s because I’ve taken the time to rest up, I’ve taken the time to food prep, I’ve taken the time to eat carefully… and that’s not to deal with the disease itself, that’s to deal with the side effects. I still have to ask myself: is it worth it?

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6 Responses to “when the cure is worse than the treatment”

  1. I can totally relate to what you are saying. It’s all about your quality of life and making decisions about what you what your day-to-day to be/feel like. I also try to do everything in MY power – nutrition, exercise, rest, etc.to live a “healthy lifestyle”. The fact is, pretty much every drug that we take has *some* kind of effect on us. It’s hard for someone who is not facing that to understand some times – Especially in our “quick fix” culture! You raise important questions!

    • So, so true, June. Not that I’d wish a chronic disease on anyone, but nothing follows set rules. Glioblastoma doesn’t follow set rules, MS doesn’t follow set rules. There are merely guidelines for the medical professionals to follow. And it’s amazing how little understanding there is of that (i.e. my body shows almost no MS symptoms while my MRIs look terrible–my first specialist couldn’t wrap her head around that, thus she’s no longer my specialist)

      And if only more people would treat themselves with the good old “wonder drug” of fresh air, exercise, healthy food… rather than looking for the silver bullet pill, right? 🙂

      • My MRIs also look terrible although I don’t feel much worse. This disease is so puzzling and the drugs are so scary. 😦 Avonex made me even sicker. Copaxone was ok but because of disease progression as showed in the MRI now I’m waiting to start Tysabri. I try to have the healthiest lifestyle possible – eat well, sleep well, exercise, manage stress – but still no sign of my MS taking a break.

      • Hi! Welcome to the “bad MRI” club! 😀 Not one that I’m proud to be part of, and I’m guessing you’d say the same.

        Yep, these drugs are pretty scary. Really, anything where Gilenya is the one that is prescribed more frequently due to “long-term patient satisfaction”, but you still have to be fairly closely monitored because of potential eye and heart issues? (I’m already really nearsighted with slight retinal problems due to the extent of my nearsightedness…)

        Speaking as someone who teaches about it, the immune system is tough to understand. And when it misbehaves in totally unpredictable ways… yeah. Repairing myelin isn’t enough, right? We’re going to have to prevent additional damage. But how?

        Good luck! I hope we both find a therapy, drug-based or not, that works.

  2. I’m going to be starting meds in about a week and this is the stuff I’m scared of. I don’t do well with side effects and I’m worried I won’t find one that I can tolerate. On the other hand, being partially blind due to optic neuritis right now sucks too. Seems like I’ll have to compromise but my body may not agree. I’m already eating clean and being healthy. Working on reducing stress now as well, so I guess I’ll have to see what happens.

    • Hi (sorry for the late reply–work is eating my life!)–
      Ugh! I’m so sorry about all of the symptoms! And it’s so hard to tell which are MS-related, which are stress-related, which are other things… etc. I’m trying to stay open-minded and give the new meds a chance. Me, I’m mostly worried about the cardiac issues, so we’ll see about my blood pressure a efw weeks form now at my recheck. If it’s still absurdly high… I’ll reconsider meds at all.

      Yeah, it really *is* a compromise. Which battle is the one worth fighting more? Good luck.


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