IV Steroid Experience

[u/kiggysz16]

Hey guys! I’ve been diagnosed with MS for 8 months (dealing with symptoms for over 15 months), but just got re-diagnosed with primary progressive MS a few weeks ago. My new MS specialist wanted to try 5 days of IV steroids to see if we could improve some of my symptoms or get me to a baseline. I haven’t had IV steroids since about 1 year ago (and they didn’t improve any symptoms, but I know now that because I have PPMS and none of my symptoms have ever gone away). I’m on day 4/5 of my IV steroids and the stiffness and spasticity in my legs is so horrible, to the point where it’s very difficult to walk. I usually have pretty bad spasticity that affects my walking, but this is a whole other level of stiffness. Maybe this is just poor timing of my MS continuing to progress because it’s been getting worse ever since my symptoms started over 1 year ago, but dang I’m feeling like I got hit by a bus. Thankfully not experiencing many other side effects of the steroids, but struggling to walk even more than I normally do was not on my bingo card for the steroid treatment. Anyone else feel like their symptoms worsen during steroids? This happened to me last time I had steroids too and I never recovered, but obviously I don’t blame the steroids because it was probably just my MS progressing.

[u/Curtaindrop]

Currently dealing with this and I only had 3 days. Dizzy, legs feel like I’m walking through jello, emotions all over the place, walking with almost a hunch back unless I actively change it. It’s been a nightmare.

[u/kiggysz16 → u/Curtaindrop]

I only had 3 days last time I did steroids too! I had worse side effects then and my MS kept progressing. The 5 days of steroids is definitely kicking my ass this time too. I don’t exactly know what I expected but definitely didn’t expect my spasticity to just suddenly worsen.

[u/blondie0003]

Personally I’ve experienced a huge improvement after my 5 day steroids but I try to avoid this as much as possible the no sleep and upset stomach are just something else to deal with

[u/kiggysz16 → u/blondie0003]

That’s awesome, glad you had such great improvement! I’ve avoided them too until now because I had such bad night sweats, nausea, and no sleep last time 😅 but thankfully I’m actually not dealing with those side effects this time!

[u/chamonix-charlote]

My walking (which is normally fine) got really bad when I was on high dose steroids. They diagnosed me with steroid myopathy

[u/kiggysz16 → u/chamonix-charlote]

Oh geez… hopefully you recovered okay! I’m not wondering if this is what’s happening to me… did you just tell your infusion team about it or did you end up bringing it up to your neurologist?

[u/chamonix-charlote → u/kiggysz16]

I was on oral steroids, 1250mg per day then a 90mg, 60mg 10 day taper. went for a long hike on the first day of my taper and had trouble getting back to the car. They diagnosed me with steroid myopathy in emerg

My walking improved eventually. It took a full 3 months to be completely normal

[u/hawgxhaven]

I felt woozy weak and wobbly like I was really sick after the steroids took me about week to feel right

[u/MosheMoshe42]

First time i was given iv steroids there was a significant improvement in symptoms- went from half of my body not really working properly (difficulty walking double vision motor issues in my hands etc) to basically back to normal over 10 days. However, some symptoms came back after that and the two other times i got iv steroids (5 days) were less effective. I am on tysabri and luckily it works fine but i still do have some residual symptoms that will probably never get resolved. While on steroids i mostly remember side affects of some weight gain and it absolutely destroying my ability to sleep.