Here we go again

[Robertaburns]

After 10 years of ending my drug treatment I am having quite severe pain in my shoulders and back. I don't think I could endure another course of steroids. What pain relief can I expect ? How have others coped?

[PMRpro Ambassador]

Not entirely clear what you mean - did you have PMR in the past and stopped steroid 10 years ago but now appear to have a relapse?

Personally, I got well over 90% pain relief after a few months of pred. Having had 5 years of untreated PMR beforehand, I regard pred as my best friend. Which is just as well as I still have needed it 13+ years on. Without it life wouldn't have been worth living.

[Robertaburns in reply to PMRpro]

I had PMR in the past but was unhappy taking steroids as among other side affects I gained 3st in weight. I gradually reduced and was able to function pain free without medication (it took 3years).

[PMRpro Ambassador in reply to Robertaburns]

If you cut carbs drastically you may well be able to avoid the weight gain, I gained weight with untreated PMR due to inactivity and comfort eating as I was depressed as a result. Once I started pred I didn't gain any more weight, it just redistributed, and after cutting carbs I lost 35lbs. I could do with losing more but it is a long story.

However, it isn't uncommon for people to relapse - the propensity for the immune system to go wrong remains, you aren't cured. I know several who have had PMR twice, a few who have had it 3 times. It is difficult to say how many since the literature counts patients whose symptoms return as they taper the pred rather than patients who get off pred and then a second episode develops. It is particularly common for people to get to zero and then the symptoms reappear after some months - the PMR was not entirely in remission, it had reached a very low level of activity and 1mg or even 1/2mg can be plenty to keep symptoms at bay but at zero pred the inflammation builds up slowly until there is enough to cause symptoms again. Prof Dasgupta, formerly from Southend, told us he sometimes keeps patients at 2-3mg as it avoids relapses. I don't think that much is always necessary but sometimes a very low dose IS doing something.

[DorsetLady PMRGCAuk volunteer]

Well if it is a return of PMR -if that’s what you had before, there is very little option other than steroids.

But if might be useful if you clarified that -and exactly described pains you have -are they better or worse at specific times of day or after activity…

[Robertaburns in reply to DorsetLady]

I just wondered if anyone else had dealt with a similar occurrence.

[DorsetLady PMRGCAuk volunteer in reply to Robertaburns]

It certainly can resurface - but not sure what percentage - but often those that do, say it’s doesn’t seem to be the same second time around.

Weight gain is not inevitable, you just need to be very aware of carbs, and there is plenty of advice on that subject in FAQs…and most other side effects can be mitigated or managed.

But you do need to be sure what is causing your pains…back pain [depending where it is] is not one of the most common symptoms of PMR.

[Seacat30]

After a 10 year gap I would start again and look for a new diagnosis and possibly a different treatment. What does your doctor say?

[Robertaburns in reply to Seacat30]

I think I might take your advice and see my GP. I am an infrequent visitor to the surgery. Thanks

[PMRpro Ambassador]

pubmed.ncbi.nlm.nih.gov/196...

jstage.jst.go.jp/article/tj...

are a couple of articles about relapse after completion of treatment in a previous episodes