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Confused about steroids

Hi all. I have a question about steroids and couldn’t find the answer through searching. My understanding is that steroids can help you recover from a relapse but have no impact on long term progression of MS. So my question is, if steroids taken during a relapse can reduce the inflammation and stop things getting worse / help you recover, why doesn’t that reduce the likelihood of permanent damage from that relapse?

I’ve never used them, but I thought it was to stop the current symptoms from worsening while not doing anything for the damage that caused those symptoms.

Are you feeling any better today?

Sorry, I can’t answer your question, but a search on the Barts Blog might be worth trying.
Clinic speak: how good are steroids for treating relapses? – The MS-Blog (multiple-sclerosis-research.org)

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Thanks NorasMom. Good advice.

Will do

I am no expert but I understood that steroids support the body’s natural defences and healing systems.
Mick

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On two occasions, steroids have ended a rolling programme of relapses that had been running for months snd doing damage. Both times, I wished I had started them sooner. Of course, those runs of relapses might have been about to burn themselves out anyway. Or maybe not: I’ll never know. What I can say is that, if there is just a heck of a lot of inflammatory activity going on, steroids really can snuff it right out. They’re heavy-duty drugs, and taking them is no joke. I would much rather not, but sometimes nothing else will do.
Alison

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Hello

I suspect there are a couple of separate issues here. The first is about disability progression and the second disease progression.

Steroids don’t cure a relapse, but can speed up recovery from one. They wouldn’t necessarily always improve disability progression, but could do so purely because the longer you have the symptoms of a relapse, the more your body has to work on the recovery. Quick remission would affect disability progression in a positive way just because the shorter the symptoms of the relapse, the less fighting your body generally has to contend with. (I think!)

Steroids will never alter disease progression, that is unrelated to relapses. Progression from relapsing remitting to secondary progressive is to be honest, a mystery to me (and to many others among our number) but I doubt very much that it’s related to relapses and our recovery from them.

This is just my feelings about the issues. It’s not based on specific data or research, but on my experience and understanding of the role of steroids.

I just had a look at MS Trust webpage on steroids (Steroids (methylprednisolone) | MS Trust) I can’t see that they are clarifying matters at all. There is one line that appears to muddy the waters rather than make things any clearer: Steroids can help the symptoms of your relapse improve more quickly. However, taking steroids will not have any impact on your ultimate level of recovery from a relapse or the long-term course of your MS.

Either steroids help symptoms of relapse or they won’t. I understand it’s about the speed of relapse recovery, but the point of that appears to help with the level of recovery. Certainly I’ve found that the shorter a relapse lasts, the better my recovery has been, thus the disease progression may not be affected but disability progression is at least marginally improved from the level if might be without the steroids.

Sue

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Thanks Alison100. Months of rolling relapses sounds like me at the moment. MS nurse said they wouldn’t recommend steroids as my symptoms are recurrence (despite the fact that they are currently significantly more severe than previous relapses).

Thanks Sue. I think the bit you quoted from ms trust is the confusion I’ve had.

MS likes to return to bits it has found particularly tasty in the past. I have no medical knowledge whatsoever, but for me new inflammatory activity is new inflammatory activity. I don’t understand why happening at the same place only worse somehow doesn’t count.

I had a thought just after I posted earlier. The reason I think as I do about disease progression and disability progression is my own experience.

I was diagnosed in 1997 with RRMS. DMDs weren’t available generally until 2002 (the ‘Risk Sharing Scheme’ whereby the drug companies agreed to drop the prices of the DMDs).

So for 5 years I had many relapses, with remission, in the main small and without the ‘benefit’ of steroids.

In 2002 I started a checkered pattern of going on and (mostly) off DMDs. I had bad side effects from 4 DMDs. So of course I had a lot of relapses, some with and some without steroids. The worst relapse was in 2012, steroids helped that one, but not completely and I’ve been a wheelchair user since then.

My point is that for me, with the relapsing remitting variety of MS, my relapses caused disability progression but not disease progression. Today the neurologists call it relapsing progressive, but I suspect that is as much related to my inability to take anymore DMDs. I still consider myself to be within the RR/SP cohort.

So for me, steroids have sometimes been almost miraculous at chasing off relapse symptoms. More often only minimal immediate effect has come with steroids. My disability has come from relapses. I’ve never actually experienced disease progression so I think that quote from the MS Trust is simplistic and confusing.

RRMS untreated by DMDs is dangerous to future physical ability. Steroids may shorten the length of relapses, but will not affect future disease progression. Relapses with or without steroids will cause disability progression, but often steroids, shortening relapse time can help to reduce disability.

Sue

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Take steroids with caution. They’re hefty drugs and should only be taken early on in a relapse not as a ‘let’s see is it makes a difference’ thing. I’ve had them twice (once IV and once oral) and felt an immediate benefit in symptoms but it was short lived as the after effects of the steroids far outweighed any benefit for me. I’ve chosen to ride out the relapses since……what a choice eh :roll_eyes:

an interesting question, I will be glad to read the answers with you