Swollen, painful hands ?carpal tunnel syndrome

[HelenDaisy]

I'd appreciate any thoughts about how to go about this. I've had PMR since March 2019, done the usual up & down, but with the help of Leflonamide I'm currently on 2.5mg Prednisone and feeling optimistic. My steroid-induced Diabetes Type 2 is also improving.

Last December I was diagnosed with mild carpal tunnel syndrome, and offered surgery which I felt was unwarranted at the time.

In August, on 4.5mg, both wrists were very painful: the classic CTS. They are now painful AND very swollen, to the point of weakness and loss of function. Oddly enough they are freeing up in the late afternoon.

I saw my hand surgeon today who thinks it's a flare of PMR. He gave me a cortisone injection at the base of my thumb for the localised pain, and has ordered another nerve conduction test.

Meanwhile, he suggested upping my Prednisone for a while. I agree that it seems sensible but wondered how high and for how long? I was OK on 4.5mg in July.

Thanks in advance,

Helen

[PMRpro Ambassador]

The usual suggestion to deal with flares is to add 5mg to where the problems appeared for a week to 10 days and then drop back to where you were last good. So on the face of it, that would be up to 7.5mg for 10 days or so and back to 4.5mg for you - if that works. At what point did the ?carpal tunnel symptoms start to appear? You say it was fine at 4.5mg - so was 4mg not as good? In which case you might need more than 7.5mg.

[HelenDaisy in reply to PMRpro]

it’s been bad since the end of August when I was on 4.5mg. But the swelling started in October and I assumed it was CTS. I dread going up to 9.5 as it seems such a backward step. But if I go down to 4,5 after a week I guess it’s ok.

[DorsetLady PMRGCAuk volunteer in reply to HelenDaisy]

It might seem a backward step, but in my mind if it solves the problem, and it not a permanent return to higher doses, its not. A backward step is being in unnecessary pain.

[HelenDaisy in reply to DorsetLady]

thank you. I’m feeling pretty sorry for myself. X

[DorsetLady PMRGCAuk volunteer in reply to HelenDaisy]

Yes, and quite rightly, it's a right pain in more ways than one... but if extra Pred helps then take it....don't suffer🌸

[PMRpro Ambassador in reply to HelenDaisy]

It isn't as big a backward step as it could be if you leave it and stay at a low dose and end up back where you started because that can happen.

[Bcol]

Morning Helen, my CTS started to play up when I got down to 5.0mg, I didn't particularly want to go on the surgery route plus it was in the middle of the pandemic. As the CTS is caused by inflammation the doc and I agreed that it was worth trying an increase in Pred. I went back to 10mg and then used my usual taper down from. Yes, it means I'm on Pred for longer but it has solved the CTS problem.

[HelenDaisy in reply to Bcol]

Thanks for your encouraging reply. I’m glad it worked for you. I’m hoping it’s the answer for me too. As I’ve had 16 operations since 2000 I really don’t want any more!

[sail26]

I tapered to 2mg pred when my left hand became painful and swollen with wrist ct. An xray showed nothing thus it was a flare. I went back to 4mg where the hand swelling and pain and ct. disappeared. Now 2 months later I am down to 1.5mg after a slower taper and my hand is back to normal. During my journey over the last two years carpel tunnel has been an issue of and on.

[HelenDaisy in reply to sail26]

that’s very interesting. Seems I’m in the same boat. I’ve taken 9.5mg for 2 days and it’s already much better. So that’s proof of a PMR flare.

[PMRpro Ambassador in reply to HelenDaisy]

Not necessarily - only that whatever is causing it is inflammation, not necessarily PMR

[HelenDaisy in reply to PMRpro]

So I guess it's CTS caused by inflammation that I could have whether I had PMR or not. Once I go down to where I was comfortable (4.5mg) after a week of 9.5, if I still have CTS I still might need the surgery? That's my understanding so far.

[PMRpro Ambassador in reply to HelenDaisy]

Yes - CTS can be isolated or part of PMR. Being part of PMR is obvious - but trauma or overuse can cause it, even an awkward movement you didn't even notice. Removing the inflammatory bit can lead to a more rapid resolution.

[sail26 in reply to HelenDaisy]

At least I can now open lids but have purchased a lid opener as I don't want to encourage the pmr

[HelenDaisy in reply to sail26]

I've got one too. Must remember to use it! And be more aware of gardening tools, especially secatuers.

[Ryeland]

hello there,

With only 8 months (so far!) PMR experience, I had a few weeks of very swollen fingers, but then read on this forum that taking Pred very early in the morning could be effective for reasons well documented on this site. It seemed to work for me (association not always cause) and the swollen hands subsided. Good luck with it.

[HelenDaisy in reply to Ryeland]

I take mine when I wake up. I’m lucky they don’t upset my stomach. I do take omeprazole at breakfast

[HennieB]

same thing happened to me. Sore wrists (sudden onset of both one morning) hurt my hand if I touched it. Fingers all painful. My very young Rheumi said its not pmr go to ortho. Ortho said 15-20% of PMR patients have wrist hand symptoms. Big US study mentionned the same a year or two ago. Ortho sends me to EMG specialist. Said 15+ % of his pmr patients have WRIST PAIN. He said you cant DO SURGERY for carpal tunnel when U have PMR. He said when Your PMR recedes so will Your carpal tunnel. He said it really isnt carpal tunnel but theres no other name for PMR wrist/hand pain. My hands were KILLING ME. A week later I went for my annual physical to my primary care Dr. he put me on 50 mg of Prednisone for 5 days then go back to regular dose 2.5. I did and in 1 day the symptoms were completely gone!!!

I took 25 the second day, 10 the third, then 5 the fourth. On the 5th day I was back again to my regular 2.5.

No advice here just telling U what I went through. Good luck!

[HelenDaisy in reply to HennieB]

Thanks for your reply. Very interesting how common it is for these conditions to go together. My orthopaedic surgeon was also sure it's PMR related.

[Exflex]

I’ve read the responses offering good advice. As I was reading your situation a thought came to mind: Are you taking AA? I had really painful hands /wrists whilst on it. After talking with my GP he said it is a possibility and switched me to Risedronate and the pain went away. At one point whilst still on AA the Rheumatologist I was seeing said I had Carpal Tunnel and wrote to my GP to arrange splints. Absolute plonker.

[HelenDaisy in reply to Exflex]

Thanks. I’ve been on AA since 2019. I’m not sure it would show now.

[Exflex]

The patient information leaflet informs about the potential side effects, but I see your point.

[HelenDaisy]

I'm just adding an update, I believe this is better than a new thread?

My GP agrees to a 5mg Predinose rise, added to the 4.5mg where I was comfortable in July. So 9.5mg now. And to stay there for 3 weeks until I have had further Nerve Conduction tests for Carpal tunnel, and I've had a follow-up with the hand specialist.

She's very understanding of the slow taper, and thinks I should just do a slow taper from 9.5mg. I'm getting over my disappointment when I felt so close at 2.5mg. Oh well, it'll be nearer 4 years than 3 with PMR, but I can't be in that pain again.

[PMRpro Ambassador in reply to HelenDaisy]

"I believe this is better than a new thread?"

It depends - Not as many people will see this because only a few of us actively follow a thread. Everyone is notified of a new thread - up to them if they read it of course.

We often tell people not to set their heart on being off pred by any given time - PMR lasts as long as it lasts and there is nothing you can do to influence that really, just make sure you can manage the symptoms as well as possible. Often though, something like an op to relieve pain, such as a hip replacement, is followed by an easier taper to a lower dose.

[HelenDaisy in reply to PMRpro]

I had a major spinal surgery 2 years ago for spinal stenosis, 20 months into my PMR journey. It was hard to cope with pain in my hips and legs from both conditions, but I made it through. If I need Carpal tunnel release I'll do that too.

[HelenDaisy]

I was in such a bad way I welcomed the surgery! It had become worse very fast, and there was no other option for me. I've also had 2 knee replacements and found the rehab for these was worse than the spinal surgery. But you will know when the time for the operation is due. And in general, if a joint can't move it can't hurt as much once you recovered from the actual op.. You will have to look after the rest of your back of course. Wishing you all the best!