MS merry-go-round

It looks like I’m already going to be back to the decision of having to choose whether or not to take meds for my MS. In the event that I decide to, I’d still have to decide which one.

I have to call the MS Lifelines people (the support staff for my drug Rebif) but I’m pretty sure I’m going to have to quit this one. It’s ironic because I thought injecting myself would be the biggest hurdle with this one and that’s no big deal. Or that I might have flu-like side effects once I got up to the full dose but I haven’t even gotten there yet.

I’ve been having chest pains and shortness of breath since I started taking it but I attributed it to other causes. It seems to be getting worse, though, so I looked up more of the drug information. This is listed as a common but “moderate” side effect, as opposed to the flu-like side effects which are described as very common but “mild.” The people I’ve known who have taken it would not describe the flu-like effects as being mild. (Edit a few days later: I did end up getting the “flu like” side effects which really meant spending half the week feeling like I’d been hit by a truck.)

But there in the prescribing information are two big knockout factors that should have made my neurologist think twice before prescribing it to me. One is that it can cause heart damage, which is not a risk I would have been willing to take given my family history. The other is that it can cause depression and suicidal behavior and should only be used with caution in people with depression, which I already have.

I’m back to wondering if I really need any of these medications at all. So far I’m likely two for two on striking out. The last one was good but it screwed up my blood levels, which my neuro said may take up to a year to come back to normal. How safe is it to have extremely low blood markers for more than a year? How safe is it to take something that can cause suicidal thoughts when you already have depression?

Meanwhile, I’ve had no relapses in two and a half years. I’ve had some worsening of my symptoms. No relapses plus worsening symptoms is pretty much the definition of secondary progressive MS. I’ve been told I already seemed secondary progressive by the time I was diagnosed because doctors brushed off my symptoms for so many years.

There’s not much you can do for secondary progressive MS. Many doctors (including mine) will still put you on meds for relapsing MS anyway, figuring it couldn’t hurt. There are only a couple of meds that “might” work for secondary progressive, but they’re new and very heavy duty meds. They’re even scarier to me than the other meds for MS.

I was doing moderately well without meds. I could live with my symptoms, even if I needed a nap most days and wouldn’t be able to hold down a full-time job. But can I still get disability if I’m not on meds? My gut is really telling me not to be on them but I don’t know if I’m required to be on one.

I do believe in mainstream medicine. I believe chemo is giving my husband a chance to live longer. My depression and anxiety meds are keeping me stable. But I’m not convinced about taking meds that have side effects worse than the disease itself. I mean, one of the common supposedly “mild” and common side effects of the drug I’m currently taking is urinary incontinence. Do I want to have to start wearing Depends or watching vigilantly for suicidal thoughts, just in exchange for maybe having fewer relapses (when I haven’t had one in more than two years anyway?)

2 Comments

  1. Can you skip the nap if you power through with caffeine? Maybe the med you need is to keep you going all day? As somebody who is on a fistful of pills that has to change every few years and dreads finding the right cocktail and the side effects that come with it, I totally feel your pain on this one.

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