Carpel tunnel: I remember when I first was... - PMRGCAuk

PMRGCAuk

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Carpel tunnel

patdencass profile image
26 Replies

I remember when I first was diagnosed with PMR & GCA over 2 years ago I had very bad carpel tunnel in my right hand also. This became easier when I started steroids. I am now down to 1mg preds but the carpel tunnel is now so bad and the pain is in both hands and wrists. I also have pain in my upper arm. Is Carpel tunnel a part of the PMR for others or is it a separate issue? Is the wrist pain arthritis as I suffer with osteoarthritis in my legs. Got to see Rheumy next week & he's talking surgery for the CT (I've had 2 failed injections). I would just like to be clearer ad this feels the best place to ask. Thanks all

Pat

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patdencass
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26 Replies
piglette profile image
piglette

I had really bad carpal tunnel in my left hand before being diagnosed with PMR. When I started taking pred it disappeared completely thank goodness. I am on a higher dose of pred than you are, so I suppose it may come back. I am not sure if it is caused by the PMR but I had never had it before.

patdencass profile image
patdencass in reply topiglette

Glad yours has gone piglette. Hope you stay well. Thaks for responding

PMRpro profile image
PMRproAmbassador

According to this emedicine.medscape.com/arti...

carpal tunnel syndrome is found in about 15% of patients as a musculoskeletal manifestation.

Are you sure the 1mg pred is holding your PMR symptoms? That would be my first suspicion - that you have reduced too far.

patdencass profile image
patdencass

Thanks PMRpro that is my worry too. Have had blood tests and am seeing Rheumy Tues. He seems hell bent on getting me off the preds. It's good to hear from others

PMRpro profile image
PMRproAmbassador in reply topatdencass

It's not his PMR or his body. I'm sure he does want you off pred, too many are desperate to do so - but it could be at the risk of triggering a relapse.

patdencass profile image
patdencass in reply toPMRpro

I'm looking forward to my apt so I can get help. It helps to get advice from this forum though as you are all real people who understand. Thanks again

Pat x

MollyBloom profile image
MollyBloom

Prior to PMR/GCA diagnosis I had what the doc and physio said was like carpal tunnel but not quite fitting the traditional presentation. It went after wearing the night resting splints for a couple of months. Recently as my pred dose reduces, the joints in my hands have become quite painful, but no return of the CT type pain.

patdencass profile image
patdencass in reply toMollyBloom

Glad you CT pain has gone. Hope your hands ease soon. Thanks for your reply Molly

pammy_hyland profile image
pammy_hyland

I've had both my hands operated on for Carpel tunnel it is part of the condition they were both successful and I am glad I had it done .

patdencass profile image
patdencass in reply topammy_hyland

Thanks Pammy. That's reassuring

alice1940 profile image
alice1940

I had carpel tunnel before having PMR and was talking surgery but going on steroids for PMR the pain went away l decided to go ahead with surgery on both hands ( not at the same time ) so that if the pain came back on a lower dose l wouldn't have to go through appointment,s again the surgeon agreed to go ahead ,after surgery was told to take painkillers for a few days but didn't need any as the steroids helped with the pain , Alice

patdencass profile image
patdencass in reply toalice1940

That's brilliant. All this reassurance is helpful as only another sufferer really knows. Thanks

Megams profile image
Megams

Hi Patdencass - for what it is worth I was informed by a Specialist (Thyroid) that this can be related to carpel tunnel - do you have thyroid issues at all? I have PMR 15+ months and had the odd twinge within wrist areas but fleeting, gone by morning.

patdencass profile image
patdencass in reply toMegams

Haven't had thyroid checked for some while. Will follow this up. Thanks Megams

Doralouise77 profile image
Doralouise77

I had carpel tunnel surgery before the diagnosis of PMR and it failed. I had excruciating nerve pain post-op and the tests done were worse than pre-op. I was still in pain with it when I went on Prednisone and that gave some relief but now decreasing the dose the pain is coming back. My rheumy seemed to allude to the Prednisone having a positive effect on the carpel tunnel. If it does though wouldn't people try that before surgery ? (which I would never do again)

Cheers

p.s. I see the word "medic" , in Canada we would interpret that as "paramedic" but I sense it means something else in the UK ? Thank you.

PMRpro profile image
PMRproAmbassador in reply toDoralouise77

In the UK paramedics are generally called paramedics - or they are referred to by the ignorant (including politicians) as ambulance drivers... (I have one in the family).

The term medic is used to mean doctors more often than not.

Doralouise77 profile image
Doralouise77 in reply toPMRpro

Thank you!

patdencass profile image
patdencass in reply toDoralouise77

Scarey. Sorry op went wrong for you. Hope you continue to improve

Doralouise77 profile image
Doralouise77 in reply topatdencass

Patdencass, thank you, I would never, ever, ever have it operated on again :-( I had ongoing 24/7 excruciating pain for months after. Live and learn eh ? :-)

30048 profile image
30048

I was told by a very good doctor that carpal tunnel was a part of GCA and PMR. I did not have it prior to being diagnosed even though I had arthritis in my hands. As I reduced the prednisone ( I was on 7 ....came down from 80) the pain in my left hand became intense and I was told I needed surgery. The surgery went well , although I did not heal very fast, but I had a flare of my GCA and had to go back up to 80 mg. I was told by another doctor that it happened because I had not been given any additional prednisone to counteract the stress of the operation. Who knows... Just a cautionary tale. I am now down to 10 milligrams of prednisone and my right hand is getting bad. Do not know what I should do. My advice would to be very careful and to make sure they up your prednisone if they operate.

patdencass profile image
patdencass in reply to30048

Gosh it's a minefield isn't it. Thank you for your information, it's so helpful. I will go to the rheumy armed as well as I can. I feel so disappointed as I thought the preds were on the way out but I really think I'm going to have to increase them. My fatigue is worse also so it all points that way. I've had the carpel tunnel tests done and will get results Tuesday. Good luck with your recovery

30048 profile image
30048

It IS a minefield. Good name for it. Hold your ground....getting off prednisone is a goal we should try to achieve BUT I personally think we are pushed too fast and some times with a backward result. Good luck !!

PMRpro profile image
PMRproAmbassador in reply to30048

You are in good company here with that belief! We do our best - there are rheumies who agree and others who are learning!

The "Dead Slow and Nearly Stop" approach is being used in a clinical study - which is a big step forwards!

30048 profile image
30048

Thanks for agreeing. In my experience it took so much longer to reduce my dose effectively the second time. It was as if it did not work as well. Maybe it was just me but something to be avoided if you can.

PMRpro profile image
PMRproAmbassador in reply to30048

You are quite right - it is very common for a second run to be problematic, even more so if someone gets into a yoyo situation with their dose.

I was first started on a 6 week course, 2 weeks each of 15/10/5 prednisolone and stop. After blessed relief in 6 hours with 15mg, right down to 5mg I was OK, I could have managed that, but having stopped and it all being back on the afternoon of the first day I missed a 5mg dose, I was never able to get below 9mg again without a flare. Until I worked on the DSNS approach and then I managed to get down to 5mg - although it should also be said it was a different form of steroid. In the middle, Medrol was a total disaster! Even 20mg did nothing helpful!

patdencass profile image
patdencass

Thanks for all your kind help & support x

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