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When Are Side Effects Are Too Much?

As I sit down to write this, I’ve just finished speaking to someone who was diagnosed with Multiple Sclerosis several years ago. They messaged me because they were experiencing some extreme optic neuritis as well as spasms. After inquiring more about their situation, they told me that they had not been on any disease-modifying treatments for at least two years. They told me they had stopped because they didn’t like the side effects and that they felt good for the past two years. I urged them to go talk to their neurologist, that they were likely having an exacerbation. This conversation, not the first like it I’ve had, really made me stop and think. How bad does a side effect have to be for you to risk future disability?

Anti-medication movement

There are many people that are anti-medication these days. Preferring to cast science aside in favor of their own “research”. Often preferring to believe in vast conspiracy theories instead of logic. You need only turn on the news to see the effects of this, that diseases, once eradicated, are making a comeback because people have chosen to turn their back on some of man’s greatest achievements: vaccines. Some of those that opt not to take medication to slow their disease progression are no doubt part of this group of people. There is little to say to those who think this way; they’ve already turned their back on the science, the independent studies, and the years of evidence. That isn’t everyone that opts out of taking a disease-modifying medication, though; there are many that simply can’t tolerate them.

Side effects vs. the effects of untreated MS

The question of tolerance and how it relates to one’s future is what I’m specifically wondering about here. There are some rough side effects that can come with the Multiple Sclerosis disease-modifying drugs (some people can even be deathly allergic to them). But what is too harsh compared to what the disease can do? Everyone deals with side effects differently, but it seems like there is less of a willingness to take these medications than the treatments of other diseases. Chemotherapy is very hard for those who have cancer, but they still endure it. That may seem like an extreme case, but if you’ve ever seen the effects of untreated MS, you might think differently. When I think about the person I spoke of at the beginning of this article, I wonder if the side effects were bad enough that having this exacerbation seems worth it: knowing that once that myelin is damaged or gone entirely, that it can’t be replaced. That those issues have the potential to linger or never get better, that the disease is now very active again.

I’m sure for some people, the side effects are too much of a hindrance in their everyday life to take the drugs that cause them. After all, you may not take anything and the disease may never progress – that happens with a lot of people. It seems like a huge risk to me with potential long-reaching ramifications. Not taking a medication to slow your disease progression seems like having unprotected sex to me: you might be fine, but you also might get someone pregnant or contract HIV. You just don’t know.

Taking these medications for the future

Finally, I simply want to say that I get it: I went a couple of years without taking a disease modifier myself. I too felt amazing while not on any medication. That is, I felt amazing until I didn’t. I eventually had several exacerbations, and I’m now disabled and left wondering what my life would have been like had I stayed on my medication and dealt with the side effects. I learned the hard way that we don’t take these medications for the present, we take them for our future. Everyone has to find their own way when it comes to MS treatment, but please remember why we are urged to take these medications. Remember that these disease modifiers are not for any current symptoms, they’re not to make us feel better today, they’re to slow the overall progression of the disease and to preserve our abilities in the future.

Thanks so much for reading and always feel free to share!

Devin

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Comments

  • BeckyAnn
    3 months ago

    Devin,
    I have been on Avonex- Rebif-Copaxone- and Aubagio since I was diagnosed in June 2014.
    I have had serious side effects from all of them.
    The latest was the Aubagio. I took it last year for 2 months and started having large nasty sores.
    I called my Neurologist’s nurse and she told me that it wasn’t related. 3 months later when I actually got to see my Neurologist he sent me to a Dermatologist and guess what. Yep the Aubagio caused it so now I have to wait for it to leave my body because the stuff that would flush it out could mess me up even worse. And while I was on it I got new lesions on my brain.
    So I have been off anything for 8 months now and I am still having the same problems as when I started on the Avonex plus some.
    They want me to do the Ocrevus infusions but I am scared to death about what next, so I can understand people not wanting to be on anything.

  • Calie Wyatt moderator
    3 months ago

    Love this article Devin! Couldn’t have said it better myself!!

    -Calie

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