My SED rate has never shown anything. My CRP has never been high. When I was first diagnosed with PMR back in 2016 I had trouble getting up off the floor or tying my shoes. I went to surgeon that did my surgery on my left should and he gave me cortisone shot. I was instantly better. I was finally diagnosed with PMR and given pred. It took very gradual lowering to get off Pred. My bone density was check and there was first stage of bone thinning due to long term Pred use. I was switched to hydroxychloroquine sulfate at 400 mg. That makes me bloated and made my guts hut and got so bad I could not eat. I tried to go drug free. That did not last long. I was give pred again at 5 mg and I started taking 200 mg of hydroxychloroquine sulfate. This still gives me gas but I can tolerate this level. I was feeling good until dropping below 2 mg of pred. Through out this I have had issue with my hands. I had my wedding ring enlarged and I can't get it on in the morning again. Some caffeine and I can do it. I had a nerve conduction test and while I have some carpal tunnel it was not judged the cause. My right hand can go numb in the middle of the night and wake me. Hanging it down from the side of the bed helps. Driving for an hour and my fingers go numb. My knuckles can lock and it can be very painful to move them. I am concerned about being able to do things with my hands. My left hand is swollen but does not lock as of yet. I figure since I am doing lots of yard work and I am right handed that it bears the brunt of the work. My grip on either hand does not feel as strong.
I have been an active person and try to maintain 7K steps a day. I would expect some of the things I do to make me sore but this seems more than that. I can stop for days and still not be better. I am stiff in the morning and sometimes after sitting and reading later in the day . I get on the treadmill or go birding and feel better. But as time goes on it takes more and more effort to get to this point. It takes a mind set to keep moving. Since PMR feels like muscle pain but is not weak muscles I know that this you can find the strength when needed. But it is getting harder.
Is this PMR returning? Anyone see the same symptoms? Or is this rheumatoid arthritis?
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I;d say it is more likely PMR that hasn;t ever gone away. 2016 to now is not really long term pred use and hydroxychloroquine has no proven benefit in PMR. Carpal tunnel symptoms are also typical of PMR. If it were RA they would see erosion in the hand joints and although it could be - why assume RA rather than PMR? PMR requires a median duration of steroid management of 5.9 years - you are well inside that so why wouldn't it be PMR?
There may be something you can do about your hands. You say your fingers go numb and sometimes "lock". First off, you are stressing something when gripping the steering wheel, so need to find a way to flex your hands for a moment every so often if you must drive for long periods. When you take a break when driving, and at other times in your days, try massaging your finger joints. Take each knuckle joint between the thumb and forefinger of the other hand and pressing gently rotate over the joint three times in each direction. Do this to all your fingers. You can also massage the palm of your hand with the thumb of the opposite hand. Sometimes you may feel a tendon sort of catching. This is where you concentrate your efforts because that may be where the finger is "locking" and the gentle massage should kind of lubricate the area and make locking less likely.
Thanks I will definitely try that as it really gets your attention when they lock. I need to use the other hand many times to be able to get the finger out of its lock and stop the pain
I had something called "trigger finger" some years ago, long before PMR. Doctor said the usual treatment was to snip a tendon. Not attractive option to me so I got referred to a physiotherapist. She was a young woman who had to do some research. Second visit she showed me how to massage the hand, helping me find the place where the tendon was catching. Problem solved very very quickly. Like within days I'd say! I don't know if that's what you have, but even if it isn't I think the finger and hand massages will help. Good luck. And do let us know how you get on.
I have tried and it does seem to help with the locking. I also have numbness or the feeling that my fingers and hand go to sleep. It often occurs in the middle of the night that has not gone away.
I put a metal and foam finger splint on my middle finger that locked most days about 5 years ago. I think I was sleeping with my hand in a fist, and woke with middle finger triggered and often numbness in my other fingers. but I have neck issues too. I had it for about a year. I wore the splint on a night for a few months and massaged my hand daily. Touch wood it hasn't come back.....yet.
Kind of a simple question, but ... are you sleeping in a position where either you are cutting off the circulation, or the blood is draining out of the hands? Or maybe it's carpal tunnel syndrome?
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