My experience using high-dose steroids to treat an MS relapse

I thought I knew what side effects to expect, but I was surprised

Leigh Anne Nelson avatar

by Leigh Anne Nelson |

Share this article:

Share article via email
the logo for Leigh Anne Nelson's

Note: This column describes the author’s own experiences with high-dose steroids to treat multiple sclerosis (MS). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

My first experience treating an MS relapse with intravenous steroids was interesting. As a pharmacist, I’m aware of the common side effects of high-dose steroids, so I thought I knew what to expect. I was wrong.

I anticipated experiencing insomnia, so my MS healthcare provider prescribed me a sedative-hypnotic medication called zolpidem (also known by the brand name Ambien, among others). I’d planned to continue working, and I didn’t want to sleep poorly and be tired.

I don’t know if the steroids caused me insomnia or not, as I used zolpidem to prevent insomnia and not treat it. I took the medication the entire time I was receiving steroids and slept great.

Another side effect steroids are known to cause is stomach upset. I tend to get easily nauseated, so I anticipated being nauseous. Still, people told me that my appetite would significantly increase and I shouldn’t be surprised if I gained some weight.

Recommended Reading
A trio of cells floats on a white background.

EBV dormant in MS reactivates with disease activity, study finds

My MS provider prescribed omeprazole to decrease acid production in my stomach and sucralfate to prevent and treat duodenal ulcers. The latter coats damaged ulcer tissue, creating a barrier against gastric acid.

During my steroid course, I didn’t develop an ulcer, I wasn’t nauseated, and I noticed no difference in my appetite, but I was so thirsty!

Steroids cause your kidneys to hang on to sodium, or salt, in the body, resulting in increased thirst and urination. I probably didn’t drink enough fluids, as it became more challenging to get an IV placed each day due to my poor hydration.

I felt like I was pregnant again based on the number of times I needed to urinate each day (and night). Fortunately, the zolpidem allowed me to return to sleep quickly after getting up during the night to go to the bathroom.

People also told me I would have so much energy and should prepare to be super productive. This didn’t happen to me — and it was the one side effect I was looking forward to experiencing!

Understanding CNS effects

As a pharmacist, I have counseled people receiving steroids that they may experience central nervous system (CNS) side effects, such as changes in mood, anxiety, irritability, depression, and problems with thinking and memory. I have a much greater appreciation for these side effects now.

My grand plan to continue working while receiving steroids did not come to fruition. It wasn’t a result of my physical MS symptoms, but rather because the steroids’ CNS side effects prevented me from thinking clearly.

An example of this difficulty was properly placing a stamp on an envelope. I knew I needed a stamp to mail a letter, but I couldn’t determine whether it went on the envelope’s top left or right corner. I eventually Googled the answer. I guess it’s good that I didn’t forget how to use the internet!

Another example was my inability to focus during a meeting. I felt outside my body, almost floating and looking down on everyone. I couldn’t follow conversations, as I had trouble determining who was speaking. I also needed help comprehending everything being said when more than one person was talking. To understand anything, I needed to watch the person’s lips moving and concentrate.

Everything I did at work took me at least five times longer than it had before, and I was making careless mistakes. I decided to leave work and go home, as I was utterly ineffective.

All of these issues resolved entirely within a week after completing my steroid course.

Moving on to my next MS relapse and second round of high-dose steroids: Based on my previous experience, I decided I shouldn’t work during this time. Surprisingly, though, I didn’t experience any CNS side effects and could have continued working. My only symptoms were increased thirst and urination.

Relapse and IV steroid treatment No. 3 were a repeat of Round 2, and I continued to work this time around.

I hope not to experience another relapse, but I realize it’s likely to happen at some point in my future. Currently, oral and intravenous high-dose steroids are usually the first line of treatment for severe MS relapses. I have gained a better appreciation of the side effects associated with these medications and their unpredictability.

Will I continue working the next time around? The answer depends on many different factors, but trying to predict what side effects I may experience won’t be one of them.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Robin L Miller avatar

Robin L Miller

You should do a full review of the actual benefits of high dose steroids for MS relapses before taking them again, and have a talk with your neurologist about this. They are not as beneficial as you might think in many cases. Coupled with the side effects, which also include other serious, less common ones, you may not want to take them again.

Reply
Lesley Wicks avatar

Lesley Wicks

Hi I've had MS for approximately 20 yrs. When I have an exacerbation I also get put on Steroids. I have found that when I take them I feel Great, Invincible ready to take on the world! The major problem that I have with taking them is I'm Constantly hungry. When I'm eating breakfast I'm thinking about Lunch when I'm eating Lunch I'm thinking about what's for Dinner and I snack constantly in between it's an awful side affect...

Reply
Julie Farkas avatar

Julie Farkas

How many drugs did you take to treat the side effects of high dose steroids? I’ve never seen an article on polypharmacy for the lay person in newsletters like this one. As a pharmacist, you are the perfect person to bring awareness to this issue. I hope to see more articles about the problems caused by drug cocktails in MS treatment.

Reply
Elizabeth Beem avatar

Elizabeth Beem

I also have had oral and IV steroids, although I only had iv steroids once. I was finally diagnosed in the early 90’s so I’ve dealt with MS exacerbations for many years. You did not address all the negative effects of mega doses of steroids on the body which are numerous. Heavy steroid uses apparently affected the abnormal land rapid growth of a cataract in my left eye. The rapid disintegration of my right hip was attributed to the large doses of steroids. Recently it was discovered that the bone density of my teeth has been affected, Then there’s the excessive facial hair. Massive dosages of steroids may be necessary, but be cognizant of the long term effects.

Reply
erik oxy avatar

erik oxy

how did it steroids do as far as your exacerbation? I have had m.s. for 34 years.. The iv steroids worked every time , but mind you, about 3 day in I felt great , 4 and 5th day , I felt like I was hit by truck, full force.. nthen after a month i was back attacking life !!! for some reason, the past 2 years they give me the oral, for 2 or 3 days.. I still felt awful after wards but, it seems to dramatic important isn't happening...Next time, I want to do the it's I think
... what's your experience ?

Reply
Eleonora avatar

Eleonora

"As a pharmacist, I’m aware of the common side effects of high-dose steroids, so I thought I knew what to expect."

I'm not a pharmacist, so I wasn't aware of the risk of avascular necrosis as side effect of high-dose steroids, which necessitates total hip replacement. I had three courses of IV steroids (one was even 5 days of 1000 mg methylprednisolone instead of 3) and not once did my doctors tell me about that risk - even though it's not extremely rare. Reading the comment section here alone revealed that someone here suffered from disintegration of their right hip due to steroids.

Two of my three steroid courses were useless for me and didn't resolve the symptoms, so I definitely wish someone would have told me about this severe potential side effect.

Reply
Tom A avatar

Tom A

In the 90’s, my MS neurologist believed in the therapeutic effect (anti-inflammatory) of high dose steroids (HDS). I took them, at home (intravenous) perhaps 4 or 5 times, and some stronger oral varieties as well 4 or 5 times. I was on Betaseron as well. The challenge was to treat within 5 days of symptom onset. It worked well. Problem with proving that it worked well, was the difficulty in getting large scale studies organized around people having relapses so that they were treated with HDS in 5 days. I was able to sleep. Got pretty hungry, and had lots of energy and got stuff done. Nothing currently shows up as a long term consequence. Haven’t had steroids since 2000. Still walking but not “long term symptom free”. Could be much worse. How would it have turned out otherwise???

Reply
Mark Silvester avatar

Mark Silvester

After 25yrs of MS I had a relaspe was put on a diabetes ward. They did finger prick tests 3/4 times daily I was on IV steroida for 3 days. After 3 days whilst the diabetic sister did the prick test she also did the test to identify if it was drug induced diabetes. The result came back positive. After the 3 days I was still adiabetic but after the 6th day my evening test showed I was on border line for diabetes and on 7th day both morning ,lunch time & evening diatetic results showed I was just under the levels. Left hospital with nothing for being a diabetic. Then #yrs later I was in again + more steroida. Never below the level so left being a diabetic. With diet got down to borderline again.

Reply
Valerie avatar

Valerie

Hello! I also had a strong thirst because of steroids. People nearby told me that I drink too much.
At the same time, I cannot tolerate omeprazole or something similar.
Do you know any other ways to treat a severe exacerbation?

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.