Hand stiffness/swelling!
Posted , 10 users are following.
Hi.
I've had something resembling PMR symptoms since Feb this year and have been on Pred since, which has virtually wiped out all the symptoms until now. I was up to 30mg/day for an extended period and am now down to 12mg/day for the last week. My doctor and Rheumatologist have not been convinced that I have only PMR from the start, as I had severe hand stiffness and weakness in both hands and wrists when it was at its worst, as well as the usual legs and hips stiffness/weakness. Not a great deal of pain though with it. All my blood inflammation tests showed very high levels of inflammation. both agreed that the hand issues were not related to PMR and were probably the beginnings of Rheumatoid Arthritis. I had two different blood testsfor RA done as well as all the other usual tests like Lupus and Poliomyelitis etc. All were negative. As a consequence I received the rather wooly diagnosis of Polymialgic Rheumatic onset!!! I saw my Rheumatologist last week, who is still convinced I have RA in my hands as 30% of people with RA are negative to the tests. She wants me to drop my Pred 1mg/week to see if I get a flare so that she can see inflammation in my hand joints. She will then do either ultrasound scans or take fluid from the joints in an effort to prove/discount RA! Last night I had a bad flare in my L Hand that was bad enough to wake me up and is swollen and stiff today, with some discomfort. Since reducing to 13mg/day, my hand has been steadily worsening. I am convinced my Rhematologist is trying to pidgeon hole me with RA and I cannot understand why it is not accepted by the medical establishment that hands and feet stiffness/swelling/pain cannot be associated with PMR as well! It would seem to me that the chemicals/hormones in our systems that cause the PMR symptoms are systemic and would therefore be able to affect any area of the body? I would welcome anyone's thoughts on this and is there anyone else out there who suffers with their hands in this way too? Sorry for the long message btw!!!
P.S - I think this is a fantastic forum and wish everyone as speedy a recovery as possible from this awful disease.
Steve
0 likes, 30 replies
amkoffee stevep63
Posted
First of all I'm going to address the hands. I'm kind of having a similar problem with my rheumatologist but in my case it's my hands, wrist, ankles and feet. Like you I tested negative for the RA test and she even put me on an RA medicine for several months to see if it helped and of course it did not. So I'm off of that and then she puts me on gabapentin which has done nothing to reduce my pain. But I have dry eyes and dry mouth bad enough that it needs to be treated so we're thinking Sjogren's syndrome now. We're not discounting that I have PMR. I also but PMR makes your muscles hurt all over. Well to me it feels like I have the flu with the achiness and then sometimes it gets a little worse than that. But my hands and feet hurt so bad I can barely walk today. Now I'm just so sure it's Sjogren's and I'm having a lip biopsy done next week. If you have dry eyes and dry mouth you might consider looking up that disease and see if it matches up with some of your symptoms. And BTW you can tell you have dry eyes if they feel gritty sometimes or you feel like something's in your eye but there's nothing there and/or if your eyes tear up a lot.
One other thought I wanted to convey was about your Prednisone treatment. I think you're tapering way too fast. To go from 30 to 12 since February sounds like a very fast typer and tapering too fast can cause pain too.
Well that's my 2 cents worth. Whatever's going on I hope you get it resolved
stevep63 amkoffee
Posted
Hi amkoffee. Thanks for the reply. I did have a look at Sjogrens and tbh I don't think it is that. Since I've been on the pred, I have 'Bleary' eyes first thing in the morning and if it gets windy. I just rinse them out with water and it is ok for a while then. I am reducing the pred very quickly I know, as this is what the medics want atm, to see if I flare, so they can do further tests on my joints. i think I have found my base level now though. Good luck with your health!
peggy_56092 stevep63
Posted
stevep63 peggy_56092
Posted
EileenH stevep63
Posted
However - about 1 in 6 people with a PMR diagnosis have their dx revised at some stage and often it is to LORA, late onset RA, with polymyalgic onset. There are several autoimmune disorders that may cause PMR-type symptoms. It is perfectly fair of her to want to investigate her suspicions I think - though I really do appreciate your feelings.
stevep63 EileenH
Posted
brenda69464 stevep63
Posted
I was diagnosed with PMR in August.
I had major pain in upper arms below shoulders (both sides),soreness/stiffness in both hips and both wrists. My sed rates were not elevated much but within twenty-four hours of taking 15 mg of prednisone my symptoms were completely gone,thus the diagnosis. My GP seemed content with the diagnosis and I was happy to have my life back (sort of).
I have since reduced the prednisone to 12.5 mg daily and am doing alright.
I have been concerned about RA but the GP doesn't think so.
Where I live it is next to impossible to see a rheumatologist unless you are just about dead so I have to hope for the best.
Good Luck !
stevep63 brenda69464
Posted
Hi Brenda. Thanks for the reply.
I think it is far better to have the diagnosis of PMR than RA! If you're responding well to the pred and are able to steadily reduce with few symptoms, I think I would be happy with that!! Good luck with it all!
EileenH stevep63
Posted