I thought I was out if the woods after almost 2 years of Pred. Slowly tapered from 40mg down to my last dose of .5 mg two weeks ago and my PMR symptoms are very minimal, but now I am woken up in the middle of the night with intense carpal tunnel in one or both hands. When I mentioned it to my rheumatologist, she said it was not PMR related and that I need to see a hand specialist. My inflammatory markers are extremely low.
Has anyone else experienced this? How do you cope with the pain? It’s pretty excruciating!
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Bagaof4
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Might be carpel tunnel, but could also be PMR - despite what Rheumy says - and 2 years is quick to be off Pred - some may manage it, many cannot…. as for markers, they may still be low from the Pred you’ve taken, but just be aware it does take time for the inflammation build up again. …
and what minimal PMR symptoms? ?
Do you have any Pred you could take for a week or so as an experiment to see if that’s what it is? … Just a very small dose would suffice.
Minimal symptoms are slight stiffness, but very manageable. I do have a supply of Pred. Do you think .5 mg would be enough to test? I was on that dose for a month and a half before I stopped altogether. Even when I was first diagnosed, my inflammatory markers were never high. CRP was 10.5 and ESR was never over 19. Those are high for me, but not the usual. After starting Pred they went down close to zero.
0.5mg may well be enough - as many on here will testify….. and it may well be doing a lot more good than harm at that level.
Although symptoms may be minimal at the moment, they do have a habit of becoming more if you don’t take action…hopefully it will help.
But I would get hands looked at as well…could be a bit of both….and there are related posts on both, which might be useful to look at, it’s quite common [even if Rheumy doesn’t think so]
Well then, I will go back to .5 Pred and see if that stops the pain. Thank you so much for your insight! It’s all so frustrating but I am grateful to have your expertise!
Aye well - another fail for a rheumy!!!! It CAN be part of PMR. And 1/2mg can be plenty to keep very low disease activity under wraps and stop the inflammation it is creating building up far enough to cause severe symptoms. The longer you leave it - the more it will be.
You MIGHT need a few days of more to clear it out - it is difficult to know. But if you can, a very low dose is probably preferable to CT surgery. It's what I'd choose.
this is EXACTLY what I have had of late. the tylenol takes the pain away and in the DAY it goes away. I really do not feel like it is PMR. as I havent the usual signs. I think I am having prednisone withdrawal. also feel light headed. went back to half every other day. hoping that will fix it. and then be able to do half every third day etc.
Also all my arthritis is worse... think prednisone disguised a lot!
Hi, my CTS started to get very grumpy when I got down to 5mg. After a chat with my doc he said the CTS inflammation could well be part of my PMR and as it was in the middle of Covid neither of us fancied surgery. I still don't. I suggested and he full agreed that it was worth trying to go back up to 10mg, where I had no problems, and see what happens. It cleared it completely. Yes, it has added to my time on Pred but for me it was/is worth it. In terms of the pain you could also try wearing CTS wrist/support braces at night time, they are/can be very effective. Available from the usual online or high street stores/chemist's.
I have carpal tunnel & OA in both hands, plus essential tremor! Makes you realise how important hands are! I have night splints for the carpal tunnel…but it looks like it may not be that?! My husbands got bad so they went the surgical route, really simple day surgery & no more problems!
At diagnosis with PMR I had carpal tunnel-like symptoms i.e. could not move my right hand. Needed a brace. Numbness right round to middle finger. Went away with Pred 20 mg. But middle finger never fully regained flexibility.
I started with Carpal tunnel syndrome in both hands as my PMR went into remission and stopped taking Pred. Maybe the Pred. was masking it before. I've been in remission for over 3 years now. At first the CTS was quite bad but, although it was confirmed by a nerve conduction test after waiting almost 2 years, it has improved in my right hand and only occurs from time to time in my left hand. I had physiotherapy when the CTS first started as it was thought that some of the problem came from my neck vertebrae, as my posture had deteriorated during PMR. I often wake up with the tingling but it gets better during the day when I try to correct my posture more. I hope yours improves soon.
Hi, I had carpal tunnel in my one wrist a year ago. Someone suggested I go to a chiropractor. I did and he showed me some exercises and told me to ware a brace at night. I have not had a problem since. At the very least, try a brace. Best of luck!
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