Treating MS Relapses: Different Options and My Experiences

By Matt Allen G

5 min read

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.

Steroids

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.

Prednisone

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.

Solu-Medrol

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.

Acthar Gel

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!

IVIG

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.

Plasmapheresis

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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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lindacolorado Member
Matt Allen G, after reading your post about myoclonus and being related to head or spinal trauma, it got my attention. We are probably the opposite of each other, you a male at 20+, and me a female at almost 70. As I read your posting about issues with sound, it made me think of my experience getting help from Dr. Raymond Damadian and Dr. Scott Rosa. These doctors think MS as well as other neuro degenerative diseases, originate from head and or neck trauma, causing the misalignment in the cervical spine. This misalignment can cause the blockage of CSF (cerebral spinal fluid) flow into and out of your brain. It may also lead to restricted blood flow within the brain (CCSVI) and the dysfunction of the glymphatic system (micro lymphatic system in the brain) which is dependent on the proper CSF flow. This has been imaged by Dr. Damadian with advanced software and hardware, in the Upright Multi-position (weight bearing) MRI, also developed by Dr. Damadian. While doing a CSF flow study, he noticed a woman with MS had normal CSF pressure in the brain when recumbent, but it more than doubled normal in the upright position, when in normal people, the pressure was the same. He then scanned an additional 7 MS patients and found the same phenomenon. That lead to his first observational paper. The point is, that it was his first paper, after reading it a dozen times, I felt like it matched my disease. I am not a doctor, or researcher, but I was scanned by Dr. Damadian. He is able to measure the rate of CSF flow, see the blockage(s), see the back-up of CSF in the ventricles where it is produced, and he can see the leakage of CSF from the ventricles. Nobody, no matter how powerful the MRI, can see the movement of CSF but Dr. Damadian. I saw my images, saw the blockage of CSF flow in my cervical spine, and saw the leakage from all four ventricles in my brain. When I followed the leakage, it went right to my lesions. My cervical spine showed scoliosis, my atlas disc was diagonal, and my C2 was rotated. As messed up as things were in my spine, I assumed I would need surgery, but Dr. Damadian introduced me to Dr. Rosa. After studying my scans, he performed atlas alignment using the atlas orthogonal instrument (a type of focused percussion) along with IGAT, Dr. Rosa's own patented software, to perfectly align my cervical spine. I felt nothing, but my eyesight was back immediately when I sat up. I'm sure this all sounds like gobbledy gook to you, but these doctors have been studying and focusing on the junction of the spinal chord and the brain, the craniocervical junction, for decades. There is so much more to this science and so much more to this story that when I read your post, all I could think about was the importance of this region to hearing, sight, chewing, and forming a whistle (for me). When your doctor said he didn't know exactly how or what specifically caused your hearing issues, but he knew what medication could address it...I thought about how much more could have been seen by Dr. Damadian and his imaging capabilities. I'm just happy your research led you to find a doctor to solve your problem. My cervical alignment was totally non invasive, but it opened my CSF flow. Dr. Damadian explained that if you open the flow, you stop the CSF leakage, and when the leakage is stopped, the body tries to heal itself. I feel that is what I experienced. It took a year to get the feeling back in my abdomen and fingers. I no longer get bladder infections. I can form a whistle, an ability gone for 25 years, and I didn't know it was MS related. I also could speed read again, also gone for 25 years. My doctor said it could be a placebo effect. Really? I don't care, I am just happy to be able to drive again, read books, put my own earrings in, and empty my bladder. I still have MS, am still bothered by heat, but these doctors have given me a much better quality of life!
1. Matt Allen G Moderator & Contributor
 Well, I've never had any kind of head or neck trauma (as I'm sure most people with MS would say) plus, I think the whole CCSVI thing was debunked some years ago. In fact, I thought I heard something about how the data used in this theory turned out to be flawed? I can't remember, it was a long time ago. Either way, I'm glad to hear that things worked out for you.
2. lindacolorado Member
 I hear what you say about CCSVI as many researchers have attempted to disprove the research done by Dr. Zamboni. The problem is that venous studies have identified restricted blood flow in the brains of patients with MS. Dr. Zamboni felt he had found a cure at the time of his first announcement of his identification of the restricted blood flow. His solution was liberation therapy, angioplasty of the azygos and jugular veins. It was logical since angioplasty works so well to open arteries in the heart. Some people are helped by liberation therapy, some people are not, and some who are helped, lose that improvement over time. In the last 4 years, researchers have discovered the glymphatic system, a micro lymphatic system in the brain. This system is responsible for washing the brain of wastes and is dependent on the proper cerebral spinal fluid flow to function properly. This is a puzzle involving opening the blood flow to bring nutrients to the brain, opening the CFS flow to restore the normal intracranial pressure in the brain, and to allow the proper function of the glymphatic system dependent on CSF flow. More importantly, opening the CSF flow stops the backup of CSF in the ventricles, and stops the CSF leakage from the ventricles. Dr. Damadian, the original inventor of the MRI and developer of the Upright multi-position MRI, explained this all to me. You may not have had any head or neck trauma, but many with MS share this experience. If you have ever played sports, been involved in a car accident or just fell wrong, you may have created the damage. But it takes time, weeks months or years to develop symptoms that get diagnosed as MS, and few connect the events to MS. They are still looking for the mysterious virus, not seeing the CSF leakage that actually causes the lesions...because CSF does not image, much like water or air...except by Dr. Damadian in the Upright with the advanced software and hardware he developed...and no other MRI is capable of doing this, no matter how powerful. I have seen my scans, have seen the blockage in my CSF flow, and through a type of cine motion videography, seen the leakage leading to the lesions in my brain. I was lucky to know Dr. Damadian and he and Dr. Rosa helped me. There are only 3 MRIs with the advanced updates at this time. The one used by Dr. Damadian, the one being used by Dr. Rosa, and another site soon to be used by a research university to begin independent studies to verify the science originated and identified by Dr. Damadian and Dr. Rosa. There is so much more around this research, and so many people being helped with MS as well as other neurodegenerative diseases, and so much more science to be done.
temagami Member
Had the solumedrol a few times and a few years later got dx´d with osteoporosis. I´ll never know if I would have gotten it anyway, but had I known the toll that the steroids take on one´s bones, I would have taken a pass. Re: the Acthar- be careful. My doctor prescribed it and I was hesitant, then AFTER I would have had it infused I received a denial from insurance and I would have been on the hook for the entire cost- about $28000. If taking steroids what has helped during is to avoid eating sugar as in almost none and that includes white rice and pasta, and to take an anti-acid to protect your stomach lining.
1. Matt Allen G Moderator & Contributor
 Yeah, if you can't get past the prior authorization thing (when it comes to Acthar), forget it. The stuff is way too expensive! I know some people do have the blood sugar level issues with Solu-Medrol (I've had insulin shots after each infusion in the past) but I don't typically have an issue there.
steph9 Member
I am in my first relapse wince 1997. I have not been on DMT for years. Doctor gave me Acthar gel. Symptoms started to decrease about 7-10 days after completing the five day injections. The sad part is it’s been over 2 months and I have yet to actually receive Acthar because I’ve been denied by insurance. My doctor knows how tough this is to get and how important it is to start the med as soon as possible when having a relapse so thankfully he has it on hand and gave it to me in the office. I doubt very much my intense symptoms would have decreased as much as they have without Acthar. So upsetting that people can’t get the meds they need for their health. I realize I am stating the over obvious 🙁 As for side effects, I had one day and one night of crazy racing mind. I think it was the second day. After that I didn’t really notice side effects except maybe a little more sleep disturbance than normal.
1. Matt Allen G Moderator & Contributor
 ACTHAR used to be RELATIVELY "easy" for me to get when I was having a relapse, but now? I'm not sure what changed (my insurance is the same) but I just can't get passed the dreaded prior authorization process anymore. "We are writing to inform you that we, some random people sitting at desks that have never even met you, have determined that the thing your NEUROLOGIST, who has been treating you for years, says you need is actually not something you need at all." UGH... So I agree, it's very upsetting to know that people aren't getting the meds they need because some office worker is trying to save their company some money. Although who knows, maybe I'm wrong? [Major sarcasm alert] maybe they DO know better than our neurologists?

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