Forum

Steroids - What should I expect?

Hello folks - I have a question about what to expect from steroids.

I posted on the PP forum a while ago, asking about a course of steroids I was just about to take. Someone said then I’d get more info from the RR forum as you’re more used to them. Well, a few days ago I finished 5 days of 500mg/day Methylprednisolone. The neuro said it probably wouldn’t do any good (I’m not having a relapse as far as I can tell and I think I have PP), but there was an outside chance it would have some semi-permanent good effect. I think he was maybe trying to flush out whether I had PP or RR. In the end, they did no me good at all, and now I’m off them I’m worse. I read that withdrawal is a problem. I felt like death for the first 3 days after stopping but I think I’m coming out of that now. The big problem is my legs - They seem quite a lot worse now than when I started. They are so weak and wobbly. Is this to be expected? If so, any experience on how long it takes to go away?

Many thanks for any experience you can share.

I’m supposed to be PP as well. I’m 59, diagnosed eight years ago. Prior to starting on Fampyra (the ‘walking drug’ I told my doc that I had felt rubbish for months - heavy legs, foot drop, fatigue. Doc gave me a two week low dose of steroids. After two days, I felt almost cured! Fatigue, especially, much improved and foot drop almost gone. Doc had told me to ‘expect a dip’ when I’d finished the course. Well, I deteriorated rapidly, but after three days I started to improve, also taking Fampyra. Now, six weeks on Fampyra,I’m almost at my steroid peak. I understood that steroids only benefit RR, so maybe I’m not PP after all.

I’m supposed to be PP as well. I’m 59, diagnosed eight years ago. Prior to starting on Fampyra (the ‘walking drug’ I told my doc that I had felt rubbish for months - heavy legs, foot drop, fatigue. Doc gave me a two week low dose of steroids. After two days, I felt almost cured! Fatigue, especially, much improved and foot drop almost gone. Doc had told me to ‘expect a dip’ when I’d finished the course. Well, I deteriorated rapidly, but after three days I started to improve, also taking Fampyra. Now, six weeks on Fampyra,I’m almost at my steroid peak. I understood that steroids only benefit RR, so maybe I’m not PP after all.

Bump,

I finshed my first ever course (+20 years in and have been slowly SP for last 7-8 of that) after an acute relapse. Exactly like you felt dreadful coming off them but only for about 36 hours. I then had another relapse almost immediately. It’s been nearly 4 weeks now and though my walking was really terrible afterwards it’s beginning to improve a little now I think. I am not quite as bad now as at the peak of the relapse but a lot worse than pre-relapse. Hard to know what is the steroids and what is just what would have happened anyway as the relapse unwound. But miss that steroid high - was so nice to feel so “ms free” :slight_smile:

I finshed my first ever course (+20 years in and have been slowly SP for last 7-8 of that) after an acute relapse. Exactly like you felt dreadful coming off them but only for about 36 hours. I then had another relapse almost immediately. It’s been nearly 4 weeks now and though my walking was really terrible afterwards it’s beginning to improve a little now I think. I am not quite as bad now as at the peak of the relapse but a lot worse than pre-relapse. Hard to know what is the steroids and what is just what would have happened anyway as the relapse unwound. But miss that steroid high - was so nice to feel so “ms free” :slight_smile: