Hi guys x
im recently diagnosed with RRMS after seemingly having had it for quite some time. I was diagnosed after suffering a relapse (loss of sensation in my left arm and hand) and my neurologist has prescribed 500mg of Pred’ steroids to get me on the road to recovery from this. Problem is the potential side effects look awful. Can anyone share their experiences of short term steroid use please. It’s positive snd also it’s negative effects if any. Thanks so much xx
No experience, but this is the view on the Barts Blog.
I’d agree; I was given methylpred in the early days after a relapse, but didn’t get on with steroids well at all - it made me a sleepless, hyperactive, jittery nervous wreck. Decided that in the future I’d be better off turning down the steroids and just waiting out the relapse, thanks all the same!
Thank you x I’m thinking I’ll be doing the same.
Thanks man x
Hello
Steroids do have some fairly unpleasant side effects: horrible taste in your mouth, sleeplessness, feeling on edge/jittery/a bit ‘speedy’, stomach upsets/heartburn; and afterwards, fatigued, feeling bruised (and others).
But, if you take steroids very quickly after a relapse begins, they can work absolutely brilliantly. Last year, I had a relapse that I recognised as a relapse on the first day. I tested my wee to make sure I had no infection (vital), checked the steroids I had were in date (also vital), then started the pills.
I took them with a glass of milk, and made sure I had in date Omeprazole (to protect my stomach), had some liquid gaviscon and extra strong mints laid in (oesophagus protection and nasty metallic taste deterrent).
They worked brilliantly. I’d had my left leg behaving very badly (it’s normally my ‘good’ leg); it wouldn’t move at all, the foot drop on my right leg had spread to my left. It basically meant I was unable to walk at all and transfers from wheelchair to anything (bed, chair, shower chair) were very difficult and a tad dangerous. Within days my left leg felt better, it started picking up again. To my utter surprise, even my right foot started lifting almost perfectly. This amazed my neurologist, who checked his records from 7 years earlier - he’d never seen long established foot drop improve like that. (This improvement didn’t stay quite as good as this, but it’s still slightly better than before.)
Steroids, in my opinion, if taken soon enough can be worth the side effects. But they are unreliable. Sometimes they don’t work very well, or not as fast as you’d like. If you take them 3 or more weeks into the relapse, I don’t think the benefits outweigh the side effects. But I would take them everytime if I catch the relapse soon enough.
Sue
Hi I was diagnosed with RRMS in 1999 and have been prescribed 5 day course of steroids on 4 occasions. First time I took them, I was worried about any side effects. I needn’t have worried, first time I took them I had loads more energy than previously & the only side effect I noticed was a slightly different taste in my mouth. I tolerated them very well. Also, any relapse symptoms I’d been experiencing, started subsiding very quickly after taking the steroids. Don’t have any negative comments about them, although I do understand why you may be apprehensive about taking them. Annie
They’re not fun to take, but they do get the job done in terms of damping down acute MS activity. Like all meds with a strong primary effect, they can have have strong side effects too, but the really nasty ones are rare. When I’ve been in trouble I have been very glad of high dosse steroids, and they have worked well.
Alison
Hi, I had monster relapse kick off this time last year and took me 3 wks to convince me nurse to get consultant to agree to steroids, felt like they didn’t do very much to help except fix optic neuritis S waking and bladder were Wally bad, plus week after 5 day course was awful, felt really achy like I had flu. Relapse continued past Xmas Be then had another one on top. Did t ask for steroids this time as didn’t think they had done that much first time. Eventually got mri in Feb, when consultant saw state of mri be called me Be recommended course of steroids. So did what I was told and went thru rollercoaster again of no sleep but able to walk bit further then crash following week. What I’ve worked out since as ms nurse told me steroids will still be having an effect on ur system for 2 mths, and I didn’t believe her at the time looking back I can see the steroids were working both times, it’s just that first relapse was really bad and I had no way of knowing how bad it was going to be. So would I take steroids another time, for me I think it depends how bad relapse is, if it’s just a wonky arm or symptoms you can live with then better and calmer to tough it out, but maybe very necessary for big relapse as I got very sticky last time. This is not an easy one as everyone’s ms different and each relapse different. Good luck, hope things improve. F
I try to muddle through now -rather than go for steroids
Thanks guys.