I have reduced my steroids down to 5 mg but unsure as to why my hand has become very swollen and extremely painful and the swelling goes up my arm too. There are not cuts and I haven’t banged it. The dr assumed it is caused by PMR. Has anyone else experienced this? Should I increase the steroids to see if this helps?
Thanks
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Offsideinzaghi
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In early PMR a condition called RS3PE syndrome can cause swelling that can go up the forearms too but it is usually bilateral. It responds to moderate dose pred so disappears once the PMR is being managed. I don't know if it can return/appear as you reduce the dose.
Is it one or both hands? Is it all over or worse in some locations? What medications are you on?
Hi, it’s just one hand and probably primarily the pinky and middle finger and the back of my hand and going up my wrist. I’m on 5 mg, my consultant’s instruction as my PMR is still active. I had a PET scan recently.
I have upped my dose, myself, to 6 mg. Should I increase it further ?
How strange - if he thinks the PMR is still active I'm surprised he hasn't suggested trying a bit more. in case it is linked. Does the 6mg make a difference?
I haven’t spoken to the consultant since the PET scan. I was down at 3 mg before the scan as he said you get better results if you are on low dose and better it off steroids completely. So I had come down quite quickly which is why he said to go back to 5 mg and that did help the pain which had reappeared and my hand has just started to swell and be very painful over the course of this week. My dr assumed it was related to PMR but didn’t advise increasing the dose. I’m not sure if 6 mg is making any difference to the swelling and pain 🤷♀️😞
It isn't unusual for that scenario to result in a flare and difficulty in controlling the symptom afterwards. It could be a proper relapse of the still extant PMR. What we'd often suggest there is adding 5mg for a week to see if that helps - it clears out the built up inflammation so you have a bit more leeway. It is a standard approach quite a few rheumies use if a flare happens while reducing and you overshoot.
After being on Pred for 2 years (having been on just 5mg for months) I suddenly developed swelling in both my middle fingers. So bad I couldn’t get my eternity ring on.
After a couple of months or so I tried again to put it on - and - bingo, it was right as rain again. And after a recent hot holiday abroad I had no swelling whatsoever with the heat. PMR has a lot to answer for.
Thanks for this. You just never know what to expect with PMR! And can perhaps attribute incorrectly that it’s just PMR when it could be something else entirely 🤷♀️ Feel awful and such pain in my hand and up my arm. Just hoping the increase in steroid dose helps. 🤞Thanks.
Yes, swelling was part of my journey….both hands and both feet. Even before my diagnosis. Not exactly painful…more numb. I remember on my first Rheumatologist visit I could not even get my socks on my feet. That was January 2019. They are better now but it has been years….
Hi Yes i had the same thing, Doctor said it was nothing to do with PMR so it got worse and worse could not move them in the end, so had blood test and yes had to put up my steriods and within 3days all back to normal,
Thanks. I’m maybe not on a high enough dose yet so I’ll give it a couple more days before going higher. Thanks for commenting. It’s good to hear other peoples experiences and know it’s not just you!
If that doesn’t work it maybe worth going back to the GP or a decent Minor Injuries - certainly if it gets hot. We tend to assume PMR or steroids and sometimes they are not the culprits. Hope you get some relief soon.
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