Oral steroids - Large dose over 5 days

Hello,

I wondered if any of you out there have had some similar medication to what I’ve just been prescribed? What was your experience?

I’ve just got back from a visit to the neuro. He said there was probably little they could do for me (it looks like PPMS) but I am a little unusual in the way my MS presented itself. He said that there was an outside chance that a high dose of steroids might help me and have some semi-permanent effect - i.e. my legs would be better for a few months. So I’ve come home with steroid tablets - To take 500mg every day for 5 days. Reading the leaflet, it seems 500mg is a pretty huge dose, and the side effects look pretty scary (they always do don’t they. but particularly so in this case). I’ve never taken any medication before. It’s probably years since I took an aspirin! The neuro himself said the most likely effect was either no good effect or I’d curse him for the side effects.

Any help much appreciated. Many thanks

Dave

Ah Dave this is an interesting one.

IF you do have PPMS the steroids shouldn’t make any difference at all… but if it’s RR the steroids should make a difference.

There is also an RP which is Relapsing Progressive (a new kid on the block) and I’m assuming like all the progressive types the steroids won’t touch it.

Basically, without being sure which type you’ve got, the neuro is taking a chance on the steriods. A calculated risk you could say and I don’t think they’ll hurt you if you have progressive… they just don’t work.

In terms of dose, ask the quesion on EL. Those RR folk have done their steroids homework!

Fingers crossed they work!

Pat x

Hi Dave,

I had the same prescription only mine was for optic neuritis. I had no bad side affects - they actually gave me more energy which was nice :slight_smile: Hope they go okay for you.

Oonagh

xxxx

Hi Dave what was the name of the tablets please

Hi Dave

in my experience taking steroids have helped my PPMS. I found I was able to do more for myself. I usually ask my neurologist if I’m doing some activity ie going on holiday etc. If he would prescribe steroids. The main side effect I have is insomnia, which I can tolerate.

There has been some interesting research undertaken in France… high doses of steroids (500mgs) taken every month for a few days. My neurologist would not prescribe for me though. Look on MS Trust website PPMS and high doses of steroids. I would take if I could.

Good luck Dave

Carol

I’ve had the same dosage 5x100m.g for 5 days for a freezing cold left leg,they worked for a while,but as i sit messaging you my leg is freezing despite wearing long johns and having a travel rug wrapped around my leg.

“oh well it’l soon be bed time”

Mark.

Hi all My wife lost the use of her arms and legs so i gave her Pregnisone 60mg 3times a day for 4 days then 30mg same and the 10 same 4 day then 5mg once a day for 2 days it worked at first but she has slowy slipped backward after we finished off the steroids so back to square one as we live outside the UK(Bulgaria) i can buy most things over the counter in the chemist so now what she isnt that big but to lift and dress her without the ability to stand is hard work but we plod on