Reducing advice.

[Cazdud]

Hi, been on predisilone for just over 2 years for Polymialgia. Doc says blood test normal, trying to get off predisilone, down to 2mg but wake up with pain in fingers. Is there something else going on like arthiritis?

[gifford7]

It could be RS3PE.

ncbi.nlm.nih.gov/pmc/articl...

"RS3PE syndrome is characterized by tenosynovitis of extensor tendons at the wrist and (less frequently) at the feet that characteristically respond to low-dosages of corticosteroids. Its removal occurs rapidly and relapse is extremely rare in the “benign” forms.(10,11)"

[Cazdud in reply to gifford7]

Thanks

[gifford7 in reply to Cazdud]

Another excerpt from the same link.

" It is estimated that no more than 10% of patients with PMR may have an RS3PE syndrome, and some authors think that RS3PE can be considered an integral part of the spectrum of the PMR manifestations.(15)"

I had a similar experience last year with a swollen right hand [the one previously affected by a stroke] having tapered to 7mg pred. I increased pred by 3mg [to 10mg] and the problem diminished. My rheumy suggested it could be RS3PE but unusual the problem was not in both hands. I'm now tapered to 5mg pred and hand swelling minimal.

[DorsetLady PMRGCAuk volunteer]

Could be something else, but don’t discount PMR entirely -

You are only 2 years into treatment.

Blood should be “normal” - whatever that may be - just shows the inflammation is being controlled (at the moment) by the drug. Doesn’t mean the PMR is gone. Plus bloods have a habit of lagging behind the symptoms - get it tested again in a few weeks - and ask for actual readings then you’ll know if they are increasing, decreasing or staying stable. The comment ‘normal’ is actually no help at all!

Have you tried ordinary painkillers? If they work it’s probably something else, if they don’t work then more likely to be PMR.

[PMRpro Ambassador]

Is it all fingers? Or just thumb to middle or ring and little finger. One or both hands?

But just because your bloods are normal doesn't mean the PMR has burnt out - it just means you are currently on enough to stop the liver producing the proteins that raise the readings. Only just over a third of patients are able to stop pred in 2 years or less - PMR can last a long time.

[Hidden in reply to PMRpro]

Hey PMRpro, at what point is PMR over? When all symptoms gone? Just wondering if the PMR can stay inside at a very low threshold for several years and the individual not recognize it until a certain condition "flares" it back up to full blown pain again?

[PMRpro Ambassador in reply to Hidden]

The best you can say is that you manage to reduce the pred dose to zero without the symptoms due to the inflammation reemerging. That means the underlying autoimmune condition that causes the immune system to go haywire has burnt out and gone into remission.

But the potential for it to restart remains. Or perhaps, more accurately, the potential for the immune system to go mad remains. It might be PMR that reappears or it might be another autoimmune disorder. There are a few people I know who have had what is diagnosed as PMR more than once but most of them say the two episodes were totally different in almost every sense - except the symptoms were similar and fitted the PMR criteria well enough to be labelled as such. There are also people who have RA or other forms of inflammatory arthritis, other a/i illnesses such as Sjoegrens as well as symptoms typical of PMR. Turning up in no particular order.

[Cazdud]

Thanks