P.M.R and hands and fingers

[deeperpurple]

hello im new here after having p m r for over a year now my mobility has improved and now can walk for longer.im now in the last month devloped painful hands wrists and fingers .in a morning cannot close my hands is this part of it ?.Imon 6mg pred wich I cant lower anymore .I was given ibuprofen by my G P but it doesnt touch it The only way I can ease it is in red hot water for 30 mins as anyone got any Ideas for me excuse my typing BTW thanks

[PMRpro Ambassador]

Is it better if you take 7mg? Are they swollen? Have you a history of osteoarthritis? What did the doctor think it is?

You shouldn't really take ibuprofen alongside pred on a regular basis - what is your doctor thinking! Have you ever tried Flexiseq?

flexiseq.com/

It isn't cheap but it does work for osteoarthritis

[deeperpurple in reply to PMRpro]

doctor had said I shouldnt be going back up in strength ive just done all fresh bloods urine and chest xray to be refared to see a rheumy after a year on steriods this has just happend.Ive never had osteorthritis I read somewhere tha 50 percent of p m r patiants get it in hands

[Nextoneplease in reply to deeperpurple]

Hi deeperpurple 😊

This sounds miserable. I understand that you want to follow your GP’s advice but I wonder why he’s referring you to a rheumy? To get to 6mg after a year or so is good progress I’d have thought, and going up to 7mg wouldn’t be bad…. I’m left wondering what he thinks the problem is?

For info, I’ve been on pred for two years and am at 8mg, and lots of people here have been on more or for longer….

Good that your GP is taking things seriously but if he thinks a rheumy is necessary, how are you to manage while you wait?

All the best xx

[deeperpurple in reply to Nextoneplease]

Thank you I'm quickly learning that people on here are more clude up then my gp

[PMRpro Ambassador in reply to deeperpurple]

Your GP obviously doesn't know much about PMR since to be at 6mg after a year is way ahead of the curve - half of patients take more than 18 months to get to 5mg. Mind you - we are gathering that there are some rheumies who don't have much idea either!

Yes, PMR does affect hands though again a lot of doctors don't know that but usually patients had that at the outset.

He is also wrong about not going back up in dose. You are not tapering relentlessly to zero, you are looking for the lowest effective dose at any particular time and it will vary. You identify it by tapering slowly to the dose where symptoms come back and going back to the previous good dose. PMR doesn't only last 2 years - 4 to 6 years on pred is common and a small proportion even have it for a very long time, sometimes life.

There is a new paper about management of a treat to target basis for managing PMR

healthunlocked.com/pmrgcauk...

and it might be worth showing it to your GP.

Mind you - you may have a fairish wait to see a rheumy in the UK at present after only a year and already down to 6mg!

[deeperpurple in reply to PMRpro]

Thank you for your imformative answer I was considering going back to 7 and feel easier about it now

[piglette]

As the others say your GP does not seem to know much about PMR, perhaps that is why they are referring you to a rheumy to pass the buck. If they knew anything about PMR they would know that painkillers such as Ibuprofen do not really touch it. They should also know that you should be careful of giving an NSAID such as Ibuprofen if someone is on steroids as PMRPro says. You can get arthritis quite quickly. Apparently around 49 out of 50 people over 60 will get it in some form at some point. My mother got arthritis in her hands when she was forty, it literally happened overnight. Of course it could be something else in your case.

[deeperpurple in reply to piglette]

Yes I agree about my gp I'm going to have to wait and see how things progress thanks

[piglette in reply to deeperpurple]

Good luck🍀🍀🍀

[Liby57]

Hi Deeperpurple, I also had this problem. I could hardly pick up a piece of paper. I couldn’t punch my fingers together because it was so painful. I was treated for carpel and had to wear splints which was useless. It eventually got better as I reduced Prednisolone to about 4mg. I believe that my nerve pain was steroid induced.

[deeperpurple in reply to Liby57]

That's interesting to know I'm on 6mg now but I don't think I can reduce any more just yet though

[Karenjaninaz in reply to Liby57]

Rather, the pred, fluid retention induced, swelling in that area, of the wrist, pressed in the median nerve.

[Exflex]

yeah I had that in the early days of PMR. Blood results were negative for rheumatoid factors (relating to rheumatoid arthritis). At the time I was taking AA and when my GP switched me to Risedronate the hands/wrists recovered. The patient info leaflet talks about joint pain with AA.

[Missus835]

My hands do get a wee bit puffy and veins distended at times. In the beginning of PMR, my right hand was completely stiff from thumb all the way to middle finger (which never came back fully).

With the Prednisone, this eventually was alleviated. It was much like carpal tunnel and I had to wear a splint. My finger and hand joints are not painful.

It has been my experience that GP's and Rheumies in general, know very little about PMR/GCA. I even forwarded Pro's link to Treat2Target to my former Neurologist in hopes he will forward it to my Rheumy, which I cannot seem to share here, but I'm sure someone will provide the link.

[PMRpro Ambassador in reply to Missus835]

ard.bmj.com/content/early/2...

[Twopies]

Interesting because now my hands hurt all the time. Not red or swollen, just painful, even to the touch. No loss in use of them though. I figured it was from picking up my iPad 30:times a day and then typing. Even holding a book open hurts. Ibuprofen doesn’t help. I figured it’s some weird result of pmr.

[OpieD]

The same thing happened to me after having PMR in 2018. My fingers were stiff every morning and still are. My Rheumy tells me it's Rheumatoid arthritis, even though my inflammation markers are low. It's been 4 years now, and it comes and goes.

[deeperpurple]

Oh dear sorry to hear that that must be daunting to have it so long