Hello
Hope someone can enlighten me. I had 500mg of steroids last thurs, fri, sat, sun and monday. Felt ok till monday night, then felt dizzy and really weak and my body ached all over. Its now Thursday and Im still feeling really weak and achy. Is this normal? Im thinking the relapse is preferable to the way im feeling right now. Wondering if im ever gonna feel normal again.
Any advice would be great. Thanks
If you want my advice, and many people would disagree with me, I would avoid steroids in future unless your relapse is a ‘biggy’. They are more trouble than they are worth and I prefer to let nature take its course and ride out the relapse. They are horrible, you have my complete sympathy. Sorry I can’t offer you any advice on how to feel better right now. Lisa x
Thanks Lisa. I told my hubby I wouldnt be taking them again. I havent had them for a couple of years and I’m pretty sure I didnt feel like this. I would honestly prefer to cope with a relapse than cope wiith the after effects of steroids. I just hope to feel better soon as I’m no use to myself or my family like this. Kas x
i agree with lisa,steroids are not nice at all,i dont have them,i would rather wait the replapse out and i have had some biggies over the years,even my dr said she doesn’t blame me for refusing them.Hope you feel better soon i am going thru vertigo at moment not sure if its just a few bad days or yet another relapse.
Nasty treatment to be honest - try to avoid
I liken the after effects of steroids to ‘feeling like I’ve been kicked all over’. It’s that bruised feeling. It’s nice to be able to sleep again, but it’s not always a fair exchange.
I’ve taken oral steroids many times, usually against my better judgement. I’ve always been scared that if I don’t, it could be a massive relapse.
Now that I don’t have relapses, I think I’d still go along with taking them, purely because a big relapse can change your mobility quite badly.
I had a catastrophic relapse 5 years ago and I’ve not been able to walk since. (Prior to this relapse I could walk with crutches, not far but quite safely.) The steroids that time were IV rather than oral, but within days I went from being unable to feel or move anything below the waist to being able to wiggle my big toe on one foot. I recovered sufficiently over the next few weeks that at least now I can transfer without being hoisted and can walk a little bit with an FES and a walker.
So, although the side effects are horrible, I wouldn’t draw a line through the idea of taking them for a big relapse.
Sue
According to the Barts Blog steroids are not much use unless you need a fast recovery and even then they may not work.They are not exactly risk free either.
“The data favouring steroid treatment of relapses is weak and if anything marginal. Firstly, the outcome at 6 months after a relapse is independent of whether, or not, you receive steroids. All that steroids do is speed up your rate of recovery from a relapse by about two weeks; in other words you get back to you old baseline, or new baseline, 2 weeks earlier if you have steroid treatment.”
http://multiple-sclerosis-research.blogspot.com/2013/09/clinic-speak-how-good-are-steroids-for.html
Thats exactly how I feel Sue…like ive been kicked all over. I will certainly have a good think before I take them again. I desperately want to feel normal (as normal as I get) again. Its a very scary feeling, and my numbness in my hands and feet is a whole lot worse to. Moan moan moan!!
MrsJ, vertigo is so horrible. There is no escape from it and it can make you feel quite sick. Hope it settles soon x
Thanks for the link whammel. Interesting reading. Wish I had read it last week! oh well…
Hi
i am 14 years after dx and have taken IV & oral steroids about 10 times in that time. It has got me back to work quicker on each occasion. My only side effects are insomnia & metallic taste in mouth.
i guess I have lucky with them & no regrets.
all the best
neil
This is disappointing to read. I had (wrongly) concluded that steroids (taken sooner the better) would inhibit inflammation and thus probably mitigate the effects of any relapse.
Now it would seem that they do nothing at all; just ‘possibly’ bring the suffering to a close a fortnight earlier (in exchange for a different brand of suffering)?
The last couple of times I took steroids (IV rather than oral) they finally poured cold water on waves of overlapping relapses that had been going on for months. I wish I had taken them soon (as I had been advised to). Instead, I faffed about, waiting in vain for the flurry of disease activity to burn itself out, while the MS got on with vandalising my central nervous system.
I am an anecdote of one, and my experience carries no weight against the findings of the experts who have properly examined what works and what doesn’t. But if I had my time again I would have gone for the steroids sooner.
They are powerful drugs with potential side effects to match, but sometimes nothing else will do. The way I think of it: calling in the high-dose steroids to deal with a relapse is like calling in the army to deal with a civil disturbance - they’ll get the job done, no question, but don’t expect it to be pretty!
I hope that you feel the benefits soon.
Alison
I think the biggest problem with steroids (oral and IV) is their unpredictability.
The idea is that they may shorten the time a relapse takes to remit. The problem is that sometimes they do, and sometimes they don’t. And it won’t matter if they worked for an individual before, they might not work the next time.
The reason they could make a difference to outcome is that if a relapse takes months to remit, that could impact on the exercise / physio you do while the relapse is in full flood.
So, I go along with Val’s view - don’t completely rule them out in the case of a bad relapse.
But don’t worry, the side effects post steroid really don’t last long.
Sue
Whilst not in love with 'em, I seem to get on fairly well with steroids, but accept that people react differently.
For me, side effects slowly build over the five day course, and then clear in about two days.
Ben
They worked for me a few times, now they do bugger all. I am not offered them anymore due to being secondary, & to be honest, I would not take them even if I was. It’s rather like the chemotherapy, I’ve had that as well, not nice, I think I would rather run the gauntlet of the relapse than have the side affects, they do, however work for a lot of people, just not me. Tracey x
Interesting thread, this. I had a relapse last September. The neuro put me on steroids - an IV for two subsequent days then a four week taper (which did avoid the crash at the end though). I did query the steroids though as I didn’t get them till the end of November, finishing before Christmas. I asked him whether there was any point in having them so long after the relapse, and he said they might help with ‘sub-clinical inflammation’.
Anyway, I didn’t like the steroids at all; I felt like a hot sweaty mess the whole time I was taking them, and was very glad to finish. I thought they hadn’t made any difference. But now I’m feeling somewhat better than I did at the beginning of the year - almost as if I’ve had a delayed reaction to them.
Pretty mystified really.
Louise
Two years ago I had 8 relapses and I took the 2500 Mg 5 day course of steroids. Last year I had 4 relapses and again took steroids. I found that if I took the steroids early in the morning I had some chance of sleeping with some additional medication. They did make me a bit hyper active and agitated but sometimes you have little choice if the relapse is aggressive which all of mine were.
The main thing that concerned me was the dramatic increase in my weight.
I started the year weighing 14 stone and ended the year weighing just over 18 stone.
As I had been slim my entire life I found it imperative to loose the weight I had gained. I am now back down to 14.5 stone. I found going vegetarian with the exception of some mackerel fillets once a week in some pitta bread and a lot of Greek salad has helped.
When I think back I used to weigh 11 stone and I don’t know if I will ever see that sort of weight again.
If you wake up one morning and find you cant stand up or move you have little choice but to take the treatment.
My consultant told me my MS is now secondary progressive so I will probably have to endure more steroids but what else can we do. Take the medication and hope for the best. I do find the high dose steroids work and I can go from not being able to stand and standing again in a couple of days
Eugh, I hate steroids! Had horrendous reactions to them each time (I had the 500mg oral too): bumpy rash all over my body, pain across my upper back, hot sweats and -rather oddly- hallucinations! Thankfully my neurologist agreed that my body reacts rather severely to the nasty little f**kers and has it in my notes not to use again.
I can’t say I saw much benefit from them either at the time (this was 4 years ago, before it was confined MS) …it still took months before I saw any improvement in mobility.
Yup, overall my experience of steroids has been bloody awful so its a big fat NO from me!
No, no and thrice no! Tried them once, immediately after my diagnosis (4 years ago) - they were horrible and made me feel worse than the relapses! They did the job a bit, but turned me into a nervous, agitated, sleepless wreck until I swore that I wouldn’t bother again! Much prefer a nap… but consultants seem to hand them out like sweeties, with no thought for the consequences.
If your MS is now progressive, you wouldn’t necessarily expect to have relapses (although some people do), so wouldn’t have the kind of inflammation that responds well to steroids.
I would expect that with SPMS, you’d not expect to have any steroids again.
But I could be wrong. If you can put me straight, please do, tell me why you would have more steroids? I’m now SP and basically have no intention of ever taking any more.
Sue
I’ve only had steroids once and I have vowed never to have them again if I can avoid it. I took a tapering dose of oral steroids for two weeks and suffered such bad insomnia that I only got two hours sleep per night. I was like a zombie by the end of the course of tablets. Another side effect was chronic heartburn. Neither my GP nor the pharmacist told me that the steroids had to be taken with or after food. The insomnia may have been unavoidable, but it has always annoyed me that I had to deal with a side effect that could have been avoided.