Just wondering how long it takes for Iv steroids to start working on relapses, I’ve had tablets that dont seem to do much to be honest, its about 6 weeks ago that I had them.Im on gilenya and still seem to be having relapses,oh happy days

Oh well,wish I hadn’t bothered asking,just wanted other people’s experiences

Oh well,wish I hadn’t bothered asking,just wanted other people’s experiences

Hi there debater

Whoa there cowboy! pretty much everyone here takes a while to respond on here…

I had 5 days Iv steroids a year ago, and also 2weeks ago, and also a set of 3days in January. Different experiences each time, so I’d go back to gp/ Neuro and tell them too. Perhaps iv steroids are a better option for you? A bit like MS, steroid effects can vary quickly.

Take care, fluffyollie xx

Hey Debster, How are yer ? Build it - they will come… Normally the symptoms go in about 2/3 weeks with steroids. But I’ve only had them a coupla times (in 19 years) and my case is mild compared to most on here. Take care, Andy.

Oh dear looks like I’ve thrown the toys out of my pram,just sheer frustration of my own disease its been relentless.

I’ve been a member of this group for a few years now so I know how it helps people,sorry just at the end of my tether.

I will go back and tidy up my toys now : ((

1 Like

You’re all right ! No worries. If there’s one cross we all have in common it’s frustration… :wink:

1 Like

To be honest Debster, in my experience, I’d expect the steroids to have had some effect within 6 weeks if they’re going to. I’ve had neurologists tell me that they can have a delayed effect as much as a couple of months after but I’ve never really had that experience. The trouble with steroids is that every time you take them there can be a different response. And that goes for both oral and IV steroids. One time, you’ll have a positive result within days and other times weeks and sometimes, no effect at all. I’ve had all three reactions from both IV and oral. On balance I reckon IV tend to be better, but out of 4 times I’ve had IV, twice they were great, once they helped a bit over weeks and once they had no significant effect. I’ve had oral steroids about 6 or 8 times, about half of those times they were no real help, but the rest of the times they helped, not as dramatically as IV can be, but within 2 to 4 weeks I noticed improvement.

But you also have to factor in the fact that steroids do not ‘cure’ a relapse. All they can do is maybe shorten the time it takes to get partial or complete recovery from a relapse. And recovery from a relapse can take months. So you may get a sort of big bump from the steroids then take another 3 months slowly getting better, or you may just have a slow recovery over months. I’ve had relapses take 6 months to get over.

Hopefully over time, you’ll notice things have improved, sometimes it can come as a bit of a surprise, one day you’ll realise that you feel better.

And if you find after about a year on a DMD that you’re still having relapses, you can always ask to change to a different DMD. You generally have to expect at least 6 months for the treatment to start reducing relapses.


1 Like

I totally agree with Ssssue.

II have had IV steroids start to work on the second day.
And, oral steroids that seemed to take forever to produce little or no effect.
I think what really makes the difference is how fast you get them after the relapse starts.

All they act on is inflammation, so if you do not have a lot (anywhere) they simply will not appear to work.

For sure, you need to be doing something about being on the most suitable DMD.