Hand pain update

[Charliepeace]

Hi everyone

I thought it would be useful to update you on the hand pain I have recently experienced. On the sound advice of everyone on here, I increased my dose by 5 and a bit mg to 10mg daily. Happy to report that the symptoms settled back down and I am this week trying 6mg which is just above the dose that was last comfortable. Will try and stay on this dose for a good while now as I have a holiday approaching in a month’s time.

Can’t thank you all enough for helping me through this latest episode.

[DorsetLady PMRGCAuk volunteer]

Good to hear..thanks for update.

[PMRpro Ambassador]

Good - and certainly no more tapering until after the holiday! Going anywhere nice?

[Charliepeace in reply to PMRpro]

Thanks, lesson learned! We’re off to Grenada for a bit of sunshine hopefully 😎

[PMRpro Ambassador in reply to Charliepeace]

A friend has just done a Caribbean cruise on a small ship - has had a wonderful time.

[whitefishbay in reply to Charliepeace]

Bet the sun and warmth will help. 🌞

[Umufu in reply to Charliepeace]

Good choice, son lives there.

[Golf-1]

Glad to hear you have the hand pain under control.

I have stayed at 6mg since before Christmas, through New Year and until I returned form holiday just over a week ago, and this level kept PMR under cotrol.

Whilst on holiday, I tried raising my painfull right hand on a pillow when in bed.

Surprisingly, not only did the hand look thinner , but I had almost no pain for 6 weeks, and it has not returned to the previous level since I have returned.

I cannot explain this change from accute pain to no pain, virtually overnight, but it did mean I was able to enjoy my holiday, so maybe worth a try

[humlies in reply to Golf-1]

Did you raise the whole hand including the wrist, and did you stretch the fingers? I'm interested since my hands are now the only part of me affected by PMR (or of course something else!)

[Golf-1 in reply to humlies]

I sleep on my right side and pain is in my right hand. I had a firm pillow next to me about a foot away as i lay down, I placed my hand and wrist on it facing upwards I gently flexed my thumb and fingers until falling asleep, If i woke up during the night would do same again.

Worth a try, hope it works for you

[humlies in reply to Golf-1]

Thank you - I was interested to read that you did this"gently". I wonder if I am being a bit too demanding; I have 4 "trigger" fingers now and do not want any more!!

[Golf-1 in reply to Golf-1]

Painfull hand update

I am very very sorry to have to report that my miracle cure has not lasted.

Now that I am back to normal routine, the pain in my right hand is at times severe although the hand has not yet swollen to the original (pre holiday) size.

I am still raising the hand on a pillow at night but not sure now how much this is helping

[PMRpro Ambassador in reply to Golf-1]

And what does the GP say?

[Golf-1 in reply to PMRpro]

My Rheumatology Consultant in a letter to my GP , copy received yesterday, says ;-

"Diagnosis ;- PMR onset inflammatory arthritis" "He is quite stable and dosn't have much in the way of pain, discomfort or swelling but he does have some symptoms in his right base of thumb and hand" later on in the letter he says "He has one tender and one minimally swollen joint"

I am not sure which joint he is talking about; as far as I am concerned, it is the hand generally between the first nuckles of all four fingers and the thumb, and the wrist, definitely not in a joint ??

[PMRpro Ambassador in reply to Golf-1]

Sounds like the usual minimisation of what the patient is REALLY experiencing. You have to jump in the air when they press joints for them to think it hurts. And swelling is rarely part of PMR. Whatever they think!

[Golf-1 in reply to PMRpro]

I think the problem may be that the Rheumi is looking for swollen painfull joints, he did not find one so almost made one up !!!!

I have been reading lots of posts on this forum for nearly 2 years now and have learnt to be a bit sceptical about what the "Specialists" have to say about PMR. It seems that those that have the problem are best placed to advise how to deal with it.

I have always believed that Doctors can only tell us what we tell them , except they use more technical terms. It is obvious therefore, to make sure they understand what we are telling them, even if we have to repeat it, as I am going to repeat to my Rheumy -that I do not have any painfull or swollen joints.

I cannot avoid seeing my GP or Rheumatolgist as I rely on them to prescribe my medication, after that it seems as though it is up to me, and the advise I continue to get from those that really know. Thank you

[PMRpro Ambassador in reply to Golf-1]

Exactly - that is their default in rheumatology and they seem to struggle to adjust to PMR/GCA not being an arthritis - a disease of joints - but a vasculitis, a disease of blood vessels. You do get synovitis in PMR but it isn't erosive as found in inflammatory arthritis.

[beckiebaker]

I have had PMR for over 4 years, and am on daily 2.5mg Prednisone as my lowest dose without flares. It was my understanding PMR did not effect hands, but I ,too, was experiencing worsening hand pain . I contacted my Rheumatologist ,and they put me on Diclofenac 75MGDR (Substituted for Voltaren) twice daily. This gave me such relief, and I continue to take it with little to no hand pain. There is an OTC Voltaren cream , but this is oral Rx tablets. Good luck to you.

[PMRpro Ambassador in reply to beckiebaker]

PMR DOES affect hands - Prof Sarah Mackie at Leeds did some work on it and agreed it did but I don't think she has published it. That is part of the problem - things are known but not published ...