During relapses in multiple sclerosis, new or worsening symptoms exacerbate (or flare) as the disease ramps up. To qualify as a relapse, the symptoms must last for more than 24-48 hours (opinions differ among neurologists) and the attack must not occur within 30 days of a previous relapse, otherwise it might be considered a continuation of the first.
These problems are one of the hallmarks of relapsing forms of MS: relapsing-remitting MS, secondary progressive MS with relapses, and progressive-relapsing MS. Due to recommended changes in the words used to describe forms of MS and types of disease activity, you may see different terms used.
To qualify as a true relapse, there must not be another reason that symptoms might be flaring. Heat, illness, infection, fever, and severe exhaustion must first be ruled out, as they are among the causes of a pseudoexacerbation.
The treatment for an MS relapse is often a 3-day or 5-day course of high-dose (1 gram) intravenous (IV) corticosteroids such as Solu-Medrol or Decadron, followed by an oral taper of steroids such as prednisone.
You may see the IV corticosteroids used in MS abbreviated as IVSM (intravenous solumedrol) or IVMP (intravenous methylprednisolone). An alternative treatment for an MS relapse is the injectable medication H.P. Acthar Gel, an extended-release preparation of adrenocorticotropic hormone (ACTH) that stimulates the body’s adrenal cortex gland to produce steroid hormones (cortisol, corticosterone, and aldosterone).
Both IVSM and Acthar Gel can cause unwanted side-effects, which differ from patient to patient. Much of the published literature regarding steroid treatments for MS relapses focuses on the effectiveness of the treatment from a clinical standpoint. Very little is published from the patient’s point of view.
I asked members of our Facebook community about their experiences with steroids. Some of the responses are included below:
“I have been offered IV steroids twice but only did them 1 time. The first time was to help my optic neuritis but I declined because I was told that it would only speed up my eye healing by a week or 2 compared to not using steroids. I was afraid of the side effects and that I would be aggressive or irritable with my children. The 2nd time I did take the 3 day IV steroids because I went numb in my left arm and had a baby that I was trying to carry around. Luckily, no agitation or side effects except metallic taste in my mouth. I was told it might give me a burst of energy so I was kind of looking forward to that after dealing with all the MS fatigue but I didn’t get any extra energy.” – Dannielle
In a recent study, researchers evaluated the frequency, severity, and impact of adverse effects of IV corticosteroids on activities of daily living (ADL) in 59 patients diagnosed with relapsing-remitting MS who experienced a relapse. Participants reported on average four adverse events connected to IVMP while two (3.4 percent) reported no adverse event.
The most frequently reported side-effects were metallic taste (61 percent), facial flushing (61 percent), feeling sick or stomach pain (53 percent), sleep disturbance (44 percent), appetite change (37 percent), agitation (36 percent), and behavioral changes (36 percent). Of all adverse events, 34.3 percent were severe and 37.9 percent impacted on ADLs.
“I used IV steroids once for a relapse/bad exacerbation a very long time ago [almost 15 years] and I will never do it again. Fortunately, I was single and lived alone. I felt like I may have done harm to anyone near me, otherwise. [I] can’t remember the details well, but I will never forget the feeling. Never again though.” – Kerry
Researchers also looked at how much patients were bothered by a combination of MS symptoms and AEs before, during, and after treatment. What they found was that the combined effect of symptoms and side effects was not substantially different between baseline and one week after treatment. This suggests that one week after treatment, the benefit gained from a decrease in MS symptoms was neutralized somewhat by the increased burden of adverse events related to treatment. Interestingly, the combined burden was the lowest on Day Two of IVMP treatment.
“I’ve been on IV steroids twice now, they helped with my ON [optic neuritis] and numbness and weakness. But both times my blood pressure and pulse where extremely high, I had a lot of trouble sleeping, and I actually felt like I was dying at a few points due to extreme stomach issues. All in all not a fun time, but they did help with my MS. So probably would do it again if needed.” – Samantha
The number of adverse events (AE) increased with the number of days of treatment. A 3-day course resulted in four AEs on average (range 1-11) and a 5-day course in seven (range 2-12). The number of AEs decreased one week after treatment. Sometimes it can take weeks to see full improvement from a relapse and it is frightening to think that symptoms will return. But it’s important to be proactive and reduce the inflammation caused by MS to protect your body from damage.
“I have been on steroids for over a week due to an attack on my left side. It helped me … I am just scared once I’m off the steroid I will have pain again. But for now I’m better with steroids.” – Maggie
See More Helpful Articles:
Study: Jongen PJ, Stavrakaki I, et al. Patient-reported adverse effects of high-dose intravenous methylprednisolone treatment: a prospective web-based multi-center study in multiple sclerosis patients with a relapse. J Neurol. 2016 Aug;263(8):1641-51. doi: 10.1007/s00415-016-8183-3. Epub 2016 Jun 7.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.