For the past couple of months I have had painful hands (right more than the left but I am right handed) and as my appointment with my rheumatologist was well overdue I managed to get an appointment last week.
I have been on 0.5mg of Pred for the last few months and generally very well until this hand problem. I play a lot of table tennis and have started to play Pickleball and being right handed this is a big problem. The pain and ability to grip etc. does get better as the day goes on so I assumed it was something to do with my PMR.
I saw a different registrar and he said that 0.5 mg isn’t doing anything at all and I’d been on it for far too long. Hand pain is carpel tunnel syndrome and he would refer for tests.
I must admit I was convinced my hand is something to do with PMR but he may be right on that. I’ve ordered a wrist splint to wear at night and will wait for tests.
I’m continuing my Pred for the time being and ignoring what he said about that.
Does anyone else have carpel tunnel syndrome and can give me any advice ?
Thank you
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LadyPam
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Half a mg can make a big difference, I am glad you know that. I wouldn’t give it up until you are diagnosed and treated. It is doing no harm and maybe a lot of good.Some Doctors don’t seem to do subtle. The body does though. Good luck!
CTS very common with PMR - and now you have written you will see plenty of related posts….
..and SheffieldJane has said WE know that 0.5mg can make a very big difference..so null points to registrar on that - but at least he has referred for tests.
This is a recent post re PMR/CTS connection - but whilst looking did see one from 1980….
Thank you Dorsey lady, that is interesting. He did say that they would not be giving a steroid injunction into my hand but thinking back now he wouldn’t discuss my hand until we had talked about my PMR and my Pred use. I think he was just being bloody minded and awkward as I disagreed with him about my Pred. We had a little discussion to put it mildly! Thanks again x
They really don't help sometimes, do they? But as PMRpro has suggested could be OA [previously helped by Pred] so might e worth trying paracetamol or investing in a tube of Flexiseq - not cheap but good -
That registrar needs a reality check and some education - to be worried a patient is on 1/2mg is a waste of his energy! And WE know 1/2mg can be doing quite a bit!
We'd probably have suggested CTS if you'd asked - it was probably under control at higher pred since it is inflammation that causes the swelling that traps the nerve. Are all fingers affected or just thumb to middle finger?
Thanks, it’s really my whole hand, much worse in the night and early morning. Sometimes fingers are numb. This morning base of the thumb is bad and struggling to grip anything. Can’t put my weight on my hand to get off chair etc. I’ve been taking paracetamol which is helping a bit.
I'm no expert but that sounds more like either PMR or OA affecting the base of the thumb, I have that and it isn't CTS, or at least, not directly. A common cause of CTS is due to an existing inflammatory condition that isn't fully under control - such as PMR. Is it better at a higher dose of pred? I mean, 1 or 2mg?
Yes it was absolutely fine at 1, it started when I finally got to 0.5 using DSNS. I might just up to 2 for a few days to see if it improves. Thank you x
I'd take 5mg for a few days and go back to 1mg. And if THAT does the job I would prefer that to surgery which doesn't always work and for both hands involves a longish period of recovery. I think the PMR is grumbling away in the background and if you ignore the hands you might end up with a proper flare. That is always where my flares started.
My hands are an early indicator of a flare. In the past the flare has not been handled quickly enough because I waited to get instructions from the Rheumy and that took 6-8 weeks, by then it was full blown and the hands (and wrists and upper arms and leg muscles were all not happy.) I would start at 20mg and odf course the PMR subsided quickly including the hands. I know there is some underlying issues because I have a trigger finger but the swelling is above and beyond and I believe correlated to my PMR.
Just to add my 5 penny worth. I had CTS when on about 10mg, had nerve tests which confirmed it and then release surgery which has been successful. At 0.5mg both hands started to be painful and fingers stiff, which improved as the day went on. X ray has confirmed Osteoarthritis in both hands which the pred could have been masking at higher doses. Flexiseq has been helpful.
Thank you, I wore a splint last night and I think it certainly helped and have increased Pred slightly. Soreness is still there but a lot better. I’m off to get some flexiseq today xx
Mine was told by Rheumy that it couldn’t be PMR. Went to Ortho for carpal who sent me out of network to the “ best EMG” Dr in the state. He said it’s PMR. He said he sees carpal tunnel from a lot of PMR patients. Said it will recede when PMR does and no Dr Would do carpal tunnel surgery if it was caused by PMR.
He say I guarantee it will go away when PMR does. He was 100% right in my case
I had carpel tunnel syndrome for years and had cortisone injections in both wrists several times. The injections were effective for about 6 months then it gradually came back. The pain is usually worse at night and goes from wrist up to elbow. Eventually I had the operation on my left wrist which was done under local anaesthetic and the worse part was having the anaesthetic injection. Recovery was very quick and I was driving 2 days later with just a plaster over the wound. I had my right wrist done a few months later.
The surgeon told me the op would stop the strength in my hands getting worse but wouldn’t return the strength I had already lost so if you’re offered the operation I recommend you have it asap.
I am on this journey too! Just upped to 5mg and have felt less pain, but something still lingering in my wrists! Due to drop back down in two days, so fingers crossed? Ouch!
When my PMR first began, pre-diagnosis, my thumb started with pain and numbness and eventually that spread around to my middle finger, which I could not bend. It was painful to grip things. Unable to open jars, etc. Now-retired GP said it was old age. I thought CTS. After that everything went to pot. In Jan. 2022 I was diagnosed with PMR. The middle finger, right hand has never returned quite to normal, but it does bend. Was it carpal tunnel? I may never know. It went away with the Pred, although it was 20 mg. and my grip is good. It's miserable when these caregivers won't listen. I also have a NP like this regarding my anxiety med. A rheumy won't listen with regard to tapering. You are your best advocate.
Hello Lady Pam! I developed neuropathy in my right hand, wrist and arm during post op heart surgery procedure when dye injected as I was going through scanner. Fingers 4 and 5 still periodically numb 14 months' later. Very annoying when knitting! Have you investigated this condition as a possibility? By the way, the aneurism was probably caused by undiagnosed GCA. All the best!
Dear Lady Pam - I hope you can find some helpful comments in this 'reply' to you which is actually more a self-indulgent autobiographical meandering through my own experience of PMR/pain in the hands/Pred.
I have been off Prednisolone for over a year -
during my tapering - when I was on, I think, 3mg I had a flare in my hands. So I went back for a while and went back to the taper. (I think it may be helpful if I say here that my PMR started in my hands - which I understand is considered 'unusual' by rheumatologists - certainly was by mine)
I went very carefully back through the taper and decided that I was OK - my rheumy called me at some point and I told him about my progress and he gave me a prescription for what seemed to me to be a very difficult prescription for the Pharmacist to interpret - which was something like 'one or two a day as a solution for when/if I had a flare-up'.
To be absolutely frank, I cannot now remember whether I took the prescription to the pharmacy or continued to use my 'surplus' stock (aka 'stash' from the days when I was able to stretch his prescription out to cover more actual doses than he thought he was prescribing for.
(For the moment my mind is incapable of working out how that maths worked - all I can say is that his original prescription was one of the 'reducing 1 mg per month' kind and I was following one of the slow tapers recommended in this forum - so, with judicious use of a pill-cutter, I ended up with a 'stash'!
BUT to cut to the chase - since I have not been taking Pred, I have had pains in my fingers when trying to curl them - fairly randomly, either hand, sometimes both - sometimes the middle finger, another day the ring finger. - One day, following a day when I had eaten a whole cauliflower - NO pain - so is lack of magnesium an issue?
Is this some form of arthritis that has emerged?
I would welcome any thoughts/advice from the Wise Women (and Men) on this Forum.
It will be interesting to see if the blood tests show up anything useful. Have to say the thought of eating a whole cauliflower every day made me smile.
Hi LadyPam, I've been suffering with CTS for some months now. It's stopped me contributing to this site for quite a while because I'm avoiding using my laptop.
Briefly, it started with pins and needles in fingers of both hands approx a year ago and I kinda tried to ignore it, hoping it would go away. It didn't! Just got worse and worse. After tests I have been diagnosed with very severe CTS in both hands. It has been extremely painful, including along my arms, such that sleeping has proved difficult and I feel fairly depressed by it, because nothing takes the pain away.
I've been told that there's an 18 week wait on the NHS, so as I belong to Benenden, I arranged diagnostic tests through them. Fast forward and I am going for a Pre-Admission assessment tomorrow and the op on my right hand should be next Wed (it was arranged for Tues 21st until today but has had to be changed, for Consultant's personal reasons). For reasons I won't go into here, I am self-funding both ops to the tune of £6000 (ooh! that looks horrible when I actually write that down)...
Upping Pred has made no difference to me. I was on 8 mg, went up to 12.5 mg and am now on 10. I presume it's all down to my PMR which started in March 2022. My advice would be not to hang around too long in getting something done about it. I am sure mine is a lot worse, as it's now nearly a year as I said, since it started.
Thank you for sharing your experience. I’m not sure how long I’ll have to wait for the test to show it is CTS but I’ll be chasing it up sooner rather than later. Thanks again & good luck with the op xx
CTS no however wrist snd hand issue , most recently a row of carpel boned excised. Night splints have been helpful for years. Be sure to adjust / fit the stay to your particular wrist/ hand.. minor will make all the difference.. they should not feel offensive. I have found compression gloves while sleeping prevents AM finger and hand stiffness and pain. Nothing fancy usually the sizing is a tape measurement across or circumference at mcp jointsNot to worry, instructions will be very dimple
I'm pretty certain that my CTS was a side effect of my PMR. After long consultation with doc a couple of weeks ago and a sudden appearance of major muscle wasting in the left thenar aspect of my palm he has referred me up the system to consultant Orthopaedics to see what the best way forward is. Upping my Pred to 10mg has always been successful in removing the pain and we are just doing some experimenting at the moment to see what level of Pred gives me best relief.
Hi I am officially LVV and whe I got down to 1mg l developed CTS which was quite bad especially at night - since i have.been upped to 5 mg permanently it has practically disappeared which points to the LVV being the cause - went for the nerve conduction tests yesterday and felt like it was when you took the children to the doctor and the rash had disappeared !! Tests were interesting and it will be interesting to see if they still show anything?
this is all too familiar. I am sitting here with splint on thumb and left wrist and am up at least 2 hours in the night with the burning pain. Seeing my Primary first next week about it. Been building up and no amount of PT or exercise has helped. They thought medial nerve.. but not sure where it's coming from. Interesting to hear it is prednisone PMR related as I am down to l.5 once again. this hand thing has been worse for me than the 6 years of PMR. GAMBATTE as they say in Japan! courage!!! Sorry I am Not alone in this struggle. But Grateful to be here.
I upped my Pred to 5 for a few days and it definitely helped but then dropped to 1mg. Pain is there but not as bad as it was. I now have an appointment for nerve conductive tests in a couple of weeks so I’ll see what that shows 🤞
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