Swollen & stiff hands & wrists

[podo]

After 16 years of PMR with at least 8 flares, I thought I'd encountered all of the symptom options! Most of my flares have involved either legs/hips or Arms/shoulders, however the latest flare in October 2018 (now resolved by going up from 3 to 5mg), which involved both of these, has been followed by painful & swollen hands laterly going into the wrists. My GP thinks it's not the PMR & has taken bloods to try to sort it out. I'm hoping it is PMR & not RA as I don't fancy MTX! Does anyone have any experience of PMR affecting the hands?

[PMRpro Ambassador]

Have you looked at RS3PE syndrome? It can be part of PMR and also responds to pred. My hand problems were in the early days of PMR, resolved with prd and apart from flares that may trigger the tenosynovitis again disappeared most of the time.

[podo in reply to PMRpro]

Thanks for that PMR Pro. Sounds very like what I have but I'll wait until the blood tests arrive (Tues?) before uping the pred again.

[BirmLiz]

Hi Podo,

Yes I had problems with wrists, hands and fingers when my PMR started and for the first year after starting pred - it's a wonder we have any glasses left after my attempts at washing up! I took up knitting again to try to exercise the tendons etc but found that my brain fog was so bad, I couldn't follow even the simplest of patterns. It did disappear eventually as time went on but it is so frustrating. I hope they find it's PMR and the steroids cure it. All best wishes

[PMRpro Ambassador in reply to BirmLiz]

Steroids don't CURE PMR, they manage it. Not quite the same thing unfortunately!

[BirmLiz in reply to PMRpro]

Sorry PMRpro a case of the fingers running away with me before engaging brain! Should have put help with the pain not cure.

[PMRpro Ambassador in reply to BirmLiz]

Know that feeling!!!!

[podo in reply to BirmLiz]

Thank you BirmLiz, we learn new things all the time, even 16 years on. The trouble is, these symptoms get all mixed up with other ageing issues.

[BirmLiz in reply to podo]

Yes, it would be brilliant if there were a definitive test just for PMR. We live in hope xx

[PMRpro Ambassador in reply to BirmLiz]

When asked what was the most urgent requirement in PMR, I told a research group recently that it was a definitive test. Pred's fine - diagnosis isn't.

[BirmLiz in reply to PMRpro]

I totally agree PMRpro. A definite diagnosis would stop all the frenzied testing for other illnesses. I was sent for xrays on my knees, chest and hands for the symptoms plus the dexa scan. It's a wonder I don't glow in the dark! xx

[York54 in reply to BirmLiz]

My swollen, painful fingers , hands and wrists always signify a flare for me. I've had X-ray and a scan on my hands that show no inflammation. Mind you I had upped my steroids so by the time I had both, the pain had died down. The physio gave me exercises to do, I can't however , when they are really painful. Am now on 9mg , been on 5mg previously for about 4 months!

[BirmLiz in reply to York54]

Hi York54,

It's so frustrating when told to exercise when if you could do so you would have done. The trouble is PMR sufferers don't look ill so in the eyes of some of course you should be doing physio full pelt. I'm one of the lucky ones - Christmas marked 2 years since I took my last pred (fingers crossed) but I remember the pain and the fatigue very well. I was 2 years into the illness before I could think of doing physio for my knees and had to start slowly and gently. Take heart - there is an end though it may not be in sight at the moment, so keep taking the tablets and hopefully soon the pain will lessen and you can start to work on strengthening your fingers, hands and wrists. xx

[York54 in reply to BirmLiz]

Thankyou xx

[PMRpro Ambassador in reply to BirmLiz]

The dexascan is different - very low radiation load and x-rays are not bad either. So not glow in the dark yet...

[BirmLiz in reply to PMRpro]

Hi PMRpro, just trying to raise a smile : ) It was unsettling for me though - someone who hadn't had an xray for fifty years to suddenly get what seemed like so many in a short time. Ohh for the elusive PMR test - how long will we wait? Le sigh.

[PMRpro Ambassador in reply to BirmLiz]

Doubt it'll help any of us!!!!!!! But there is work going on on GCA/PMR - and a lot of other autoimmune disorders that all contribute to knowledge. Perhaps we will see something.

[podo in reply to PMRpro]

I understand that a test for IL6 might be a definitive test and differentiate from other causes but the research doesn't seem to be complete yet. I suppose that PMR is not high profile enough to encouage the work.

[PMRpro Ambassador in reply to podo]

No, not definitive, IL-6 is produced in other conditions too such as RA and cancer:

en.wikipedia.org/wiki/Inter...

What IL-6 offers is possibly a better way to monitor success of management approaches.