Treating MS Relapses: Different Options and My Experiences
Today I wanted to go over the various treatment options approved by the FDA for treating multiple sclerosis (MS) relapses/exacerbations. Sounds fun, right? Well, did you know that steroids are not the only option you have? Maybe, but unfortunately, many neurologists don't seem to even mention the fact that these alternatives exist, so many people have no idea. I'll go over my own experiences using these medications and why some of them might be a better option than others for you. Of course, I have to include this brief disclaimer: I'm not a medical professional and am only sharing my own experiences and what I've learned from various sources over the years as an MS patient.
I'm almost certain that the first medication used to treat your first exacerbation/relapse was either oral Prednisone or IV Solu-Medrol/Methylprednisolone, so let's start there.
When it comes to oral Prednisone, in my experience with the many neurologists I've seen, there doesn't seem to be a standard treatment protocol when it comes to prescribing this medication. At least... not that I'm aware of. What I mean by that is, I've been prescribed as high as 1,000 mg of Prednisone a day for over a month by one doctor and as low as 60 mg a day for a week by another. In my early days of life with MS, Prednisone worked amazingly for treating relapses! Though, it was not without some rather unfun side effects.
Side effects of Prednisone
Many people seem to complain about weight gain, but I've always had a really fast metabolism, so while I did experience an increased appetite (I couldn't stop eating!), I didn't seem to gain any weight. Although, I did get the whole "moon face thing" where your face sort of swells up causing a round, moon-like appearance, but I guess that's technically not weight gain. The most notable side effect I got was severe acne, which, when paired with the moon face thing, was enough to do a small amount of damage to my self-confidence. But as far as how it made me feel? It was like I was on a strict diet of pure caffeine, which might sound awesome but that excessive energy very quickly turned into irritability. Everything just set me off, making the term "roid-rage" come to mind. Worst of all? Sleep became far beyond my reach as I lied in bed, and my thoughts raced through my brain at 3 in the morning.
Over time, Prednisone seemed to just stop working for me, and so, IV Solu-Medrol/Methylprednisolone became my go-to exacerbation treatment. I still wasn't a huge fan of the whole IV thing, but that super-juice really did the trick, and best of all, I experienced hardly any side effects! At first, it did cause a little insomnia, but nothing like the high doses of Prednisone caused me. This next one isn't exactly a side effect, but one of the most memorable parts of my experience with Solu-Medrol was the copper taste it caused during the infusion. But compared to the taste of Prednisone tablets? It was delicious! In all seriousness, my recommendation for dealing with this would be to grab some Big Red chewing gum. This post isn't sponsored by Big Red or anything, it's just the best variety of gum I've found for masking the taste of pennies that Solu-Medrol causes. I've heard other people recommend sucking on a hard caramel candy, but I suppose it comes down to preference.
Just like Prednisone, five days of Solu-Medrol worked great at first, but after a while, it slowly lost its efficacy, which is when panic set in. What was I supposed to do now? I felt screwed! All hope was lost! Well, not really. I had started seeing a new neurologist around this time (my current neurologist) who had a bit of a reputation for using medications that most others didn't/wouldn't use. He recommended a medication called Acthar, which is typically used for people who can't handle the side effects of steroids or simply don't respond to them. Acthar is self-injected via subcutaneous or intramuscular injections over the course of five to ten days (depending on how much is prescribed by your doctor).
My experience with Acthar Gel
As I understand it, Acthar works by stimulating the adrenal glands, which then promotes the production of natural hormones that reduce inflammation. Some people do experience side effects similar to those of steroids like Prednisone and Solu-Medrol, but I myself didn't experience any. It did seem to help resolve my relapses faster, but because it didn't cause any side effects, it was kind of hard to tell if it was actually doing anything (subjectively speaking). Objectively, I would say it definitely helped resolve my exacerbations quicker than doing nothing but I never really "took enough notes" to tell if it worked faster or longer than steroids. Either way, it was a much better experience than anything I had previously used, especially since I was finally starting to not really mind needles.
Acthar is much more expensive
Now, I do want to highlight what is probably the main reason you don't often hear about doctors prescribing this stuff. Because Acthar is a formulation of a natural hormone (ACTH) and not a synthetic medication like Prednisone and Solu-Medrol, Acthar is really expensive. Last I checked, we are talking $40,000 a vial, which lasts five days. If you are doing a ten-day course like I always did, that's $80,000! Compare that to Solu-Medrol, which is roughly $50 for one day, and I'm sure you can guess why insurance would rather not pay for Acthar. So if you do choose to pursue this medication, be prepared to put on your "chronically ill clerical worker hat" and spend some time making phone calls and trying to get a prior authorization to go through!
Lastly, I just wanted to mention two other options I've heard other people swear by. The first is IVIG (Intravenous Immunoglobulin), which I've tried twice with no luck. While nothing good came of it, nothing bad came of it either. Because of that, I'm probably not the best person to give an opinion on this. All I can say is it takes a long time to infuse. I think (if I remember correctly) it was like 6-8 hours. Luckily I was able to have someone do my infusion at home, so at least I didn't have to drive to an infusion clinic and stare at the clock all day.
The second option, which I have never had the opportunity to try, is plasmapheresis. I really don't know anything about this other than it has something to do with the removal and treatment of plasma from the blood, so unfortunately, I have nothing to say about it. I've only ever met a few people who have had this done, and they said they loved it. Were they just exceptions to the rule? I have no idea, but I did want to try it.
Everyone is different
So of everything I've tried, I would have to say that Acthar was definitely my favorite. Just remember, this was a review of my own experiences and because everyone is different? Your experiences may not be the same. But regardless, these options might be worth discussing with your doctor, especially if the medication you're currently using to treat relapses/exacerbations sometimes feels like it's doing more harm than good (or nothing at all).
Which of these medications have you used? What side effects did you experience? Which medication do you prefer to use? Did I leave anything out? Share in the comments below!
How many specialists did you see before finding "The One"?