I have had PMR for over 2 years, and am now on a low dose of pred. The last few weeks my fingers really hurt. I know there are other possible reasons for this, but just want to find out or eliminate- has anyone else with our condition had this? Thanks
My hands were painful plus my grip became rubbish so most of my plates are chipped
Hi, I have only had PMR since March but since I reduced to 11mg - now on 9mg - the fingers of my right hand are very stiff and painful first thing. This usually disappears after a couple of hours or so but I am then left with tingling and occasional intermittent numbness for the rest of the day. Others on this site have mentioned problems with their hands so I have put it down to PMR but will get it checked out by my GP when I see him next.
Yes, mine too. It's frustrating. Sometimes I fear it's true RA setting in, my mother has it, but I've also read it's really not hereditary, as doctors think. Same with hypothyroidism.
i kept wondering was I using my hands too much while trying to exercise, but perhaps not.
someitmes I wonder if it's when I go off my diet and eat gluten or sugar...maybe.
It's frustrating.
I initiated this very same thread a few months ago when my right hand began to swell and my Rheumy concluded that my condition might very well be RA instead of PMR. His reasoning was that PMR doesnt affect the hands.
What I learned on this site was that PMR very definitely does affect the hands. People came out of the woodwork to comment on the pain and swelling in their hands. So yes, your condition is well known and well understood among those suffering with PMR.
Ask the GP about the possibility of carpal tunnel syndrome - it is often found in patients with PMR and the tingling and numbness would fit.
As Daniel says - yes, PMR can and does affect the hands. The leeds rheumatology group did a study and found there were many patients with hand problems and they found the signs of inflammation there. Feet too.
I had quite severe tendonitis and synovitis in my hands in the first 5 years of PMR - the years I wasn't on pred. It took some months but once I was on pred it all faded away. My feet were also very painful - it felt as if I was walking on a mix of sharp pebbles and broken glass. It too faded once I was on pred. There are many patients on the forums who describe similar foot problems.
Bro sometimes i can get up in the morning and literally watch my hands inflame say over an hour. They swell that bad i cant make a fist. Hasnt happened last 2 weeks though (touch wood). Ive had PMR for 3 months now and am on 20mg pred!!
Thank you Eileen, yes I had wondered about that myself. Do yu know how or why PMR triggers it?
I've recently been diagnosed with PMR. I haven't even gotten to see a rheumatologist yet. They're very over scheduled in my town. But that was one of my first symptoms was my hands well specifically my thumbs. Of course I also had the all over pain too.
I have had the same question to my rheumy but she is of the same thinking that if you have pain in your hands and feet it is not PMR. So for that reason I am still not really diagnosed. And yet reading amother site for RA they are not looking at hands as being the ultimate symptom for diagnosing RA currently as I guess just like PMR people present differently. My hands and feet are painful every day as well as the usual hips shoulders back amd buttocks. Everything is bilateral and its been 18 months. I do find the more I do the more they hurt. In the early months it was like carpal tunnel but its mow my whole hand. They swell a little bit not much. Joanne
Hi herbo. I am suffering from hand & feet pain on left side of my boody but I am on Prednisone. Must ne the RA.
The Abstract from an article in Rheumatology (the journal for the field) says:
"Carpal tunnel syndrome and polymyalgia rheumatica have been seen together in 12 elderly patients. In five patients the symptoms of carpal tunnel syndrome preceded those of polymyalgia rheumatica. The most likely cause of the carpal tunnel syndrome is a local tenosynovitis, but oedema due to bilateral shoulder stiffness might play a part. In the three patients who underwent nerve conduction studies, the results confirmed the clinical diagnosis of carpal tunnel syndrome. The routine use of electrodiagnosis in polymyalgia rheumatica may show a much higher incidence of carpal tunnel syndrome than hitherto realized, or indicate that the association is purely fortuitous, both conditions being common in elderly women."
i.e. in plain English - the tenosynovitis that is so commonly part of PMR is probably part of it but the shoulder stiffness can also lead to oedema. Or it may be coincidence - but I don't think they really think that!
If it is any consolation to anyone - a Spanish study expressed the opinion that the hand/feet/carpal tunnel type symptoms are not found in someone with pure temporal arteritis (as they put it) so if your hands are bad - your eyes seem to be safer. Doesn't mean you won't develop the other versions of GCA affecting the rest of the body though.
See my response to fran further up. Your rheumy is wrong.
I despair Eileen, where does it leave us patients if the rheumies can`t even get it right....don`t they collate the info they get from their patients!!
The Leeds group has - and are working (with the support groups too) on getting it more widely known. But a lot of the problem is that PMR is the poor relation, doctors think they know all about it and don't bother reading new work/thoughts. And many are downright arrogant in believing THEIR version is the right one. A lot will only read work done in an English speaking country (a lot is done in Spain and Italy) and in the USA some doctors in office-based practice tend to dismiss UK work - one patient was told by her rheumy when trying to discuss the use of pred over a minimum of 2 years when he wanted her to reduce over a few months "Oh, they do things differently in Europe." Office-based specialists and GPs anywhere do tend to be behind on up-to-date work - it isn't surprising, they have less time - but they won't hear the patient either because we don't know anything, they are the experts.
The blasted disease is the same, cause, course, effects and response to steroids, whether you are in the UK, Spain or the USA.
Not necessarily at all - if the pred dose is too low then the inflammation will return and build up. My hands are always the first place for a flare to show up - my feet have not yet joined in but then, I never force a reduction once the "usual suspects" in a flare appear.
Hi all I jumped right in on this discussion as since the beginning the hand issue has been the major issue with the doctors not wanting to say exactly what I have. When I said no to methotrexate the first rheumy advised I should get another doctor. I did and she also thinks I do not have PMR (because of the hand pain) totally ignored my feet pain. She ultrasound my hands and found no sign of RA except swollen tendons. She then gave me two hip shots a presription for naproxin and refused to give me a refill for prednisone. The pharmacy called and advised that when you have high blood pressure you cannot take naproxin so now I have to wait until Sept to see her. Thank goodness I have extra Prednisone and an appointment with GP for next Tuesday. I think Eileen you hit the nail PMR is the poor relation and here in Canada the prevelance is spread out over a large geographical area thats divided by province for almost everthing. Reading up on RA Lupus or MS would take priority over PMR. I believe I have PMR and until they can prove otherwise the treatment will not change as far as im concerned.
So a moderate dose of pred works and there is no evidence of RA?
I really don't get why they will hand out naproxen and other NSAIDs like sweeties but won't use low dose pred - which used properly is what you are looking at and has no worse potential side effects. I was at a rheumatology meeting in Whistler in May - and we had a very lively discussion about the use of pred from PMR patients point of view. There were really good rheumies there who fully agreed with our view. Which I did find quite a relief! I wouldn't mind if the other drugs did something, anything to help. They don't. So please don't condemn me to a life of pain because YOU are scared of pred - I'm not and I do know what it can do.
You are so correct and after 18 months and going from 20 to 2.5 im done with the pain hence the appointment with GP. I will be telling him that I Have on my own experimented with larger doses for 5 days at a time and the prednisone gets rid of the pain. HANDS AND FEET INCLUDED. l will follow up next week to let everyone know how it went Joanne