Steroids - how quick do they work?

Everyday living
1

Hi folks

Now I can pick my head up off the pillow following a horrible post steroid crash, I’m begining to wonder how soon I should see a benefit.

I had Iv steroids about 3 months ago and saw no benefit. I finished the course of oral steroids a week ago and so far no improvement in my walking. (I know 1 week isn’t long but was just wondering about others experiences).

I’m really worried at the rate of knots my walking is deteriorating at!

Thanks

Shuffler

2

I know it’s probably not the thing to bump my own post, but once it had reappeared after moderation, it was already languishing at the bottom of page 2.

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Hi Shuffler

It must be different for everyone. I have always had a quick result but not keen on the sideffects. The problem with MS is that it is unpredictable and you might not be aware of improvement but this coud be because the relapse was more severe and the steroid has made the symptoms less than they would have been.

You need a chat with your MS Nurse/Gp/Neuro about the next step.

I hope you improve soon.

Cheers

Moira

4

Thanks Moira,

I’m waiting on a call back from my nurse, but just wondered what others experiences were.

Everyone here is sooooooo helpful, it’s just nice sometimes to get stories from real people to add to the information from the medics.

5

Steroids normally work within the first week. I hope your MS nurse can help you…take care

6

Thanks Blossom

My walking has been deteriorating steadily over the last 7 months and neither set of steroids seem to have had an effect.

I fear the word “progression” may be looming in my next neuro appointment. :frowning:

7

Oh dear Shuffler, so sorry you have no improvement yet. Fingers crossed the steroids work their magic on you soon. (Still haven’t plucked up the courage to take mine yet!!)

Hope the nurse can help you. Hugs. x

8

Yes! you said the iv steroids didn’t work so I’m not sure of the reasoning behind the oral. I do hope your MS isn’t progressing shuffler.

Noreen xxx

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Hi Shuffler

Any improvement today? I usually see some improvement before the end of the course, say on day 4. They seem to free off my legs so they will move although still at a snail’s pace but at least it is an improvement on being seized up.

I’ll keep my fingers crossed for you, hun

Tracey x

10

I had a quick response to IV steroids the two times I had them (like in less than a week), but it does depend on you, and how bad the relapse is.

Like Noreen, I wonder why you were given oral steroids so soon after the IV. Most authorities say that there should be at least 6 months between treatments.

If you were only DXed this year, and are already on a DMD, I can understand why “progresssive” is in your mind. I have been in that awful waiting situation for most of this year (but in my case it is a matter of probably stopping Copaxone - which I think has kept me free from relapses for almost two years).

Geoff

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I had an almost immediate response to steroids the first time I had them and a small and short-lived response the second time. I’m still on Tysabri (because I qualified as RR from my response to the first lot) but I think my response to the second set of steroids suggests I’ve moved to SP. My lovely neuro has put me on Amiloride in case it slows down progression. Have people seen the stuff about the MS Smart trial on some licensed drugs that may slow down progression? Amiloride is one of them and this is what I’ve been waiting for.

12

Thanks for the replies everyone.

Tracy - if anything I’m walking worse today. Could be I’m so wiped out by the after affects of the steroids I guess.

Geoff - I’m on Rebif and was only diagnosed in March. I hope you manage to get some answers. I usually find knowing is better than not. My brain fills in the empty gaps with all sorts of horrible scenarios!

Sewingchick - have they said whether they will stop the Tysabri if you are sp?