I've had PMR/GCA for 5 years, and I'm currently at 3 mg prednisone. I haven't had any PMR/GCA symptoms for over a year (one PMR flare in 2022 and one GCA flare in 2020).
In May I developed carpal tunnel in both hands/wrists, then in July trochanter bursitis and shoulder pain/tenderness that I think may be shoulder bursitis. My rheumatologist had me raise my prednisone to 10mg for a week when the carpal tunnel started but I didn't have any relief. Aleve (12 hour NSAID) helps quite a bit, especially if I take it every 12 hours.
What's going on??? I turn 70 in January and feel like my body is falling apart piece by piece. Without the Aleve, I hobble when I start to walk, it's hard to lift my arms over my head, and I have significant hand pain and weakness.
Is this related to PMR/GCA?
What might help? I'm wearing wrist braces at night and saw an occupational therapist. I do the exercises for carpal tunnel and trochanter bursitis, but there's no improvement.
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Viola1
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I’m sorry to hear this. There does appear to be a link between PMR and the conditions you write about. The more experienced will be along soon but in the meantime you may want to read this from ‘Related Posts’ concerning carpel tunnel and how some people have managed:
It doesn’t sound as though your rheumatologist is being too helpful (??). If 10mg pred hasn’t alleviated your symptoms he/she should be investigating further (my opinion). I would be pushing for this.
I forgot to mention two other recent developments - trigger thumb and ropy tendons in both palms that may lead to Duypens Contractures. The base of my thumb was injected with steroid and that has helped somewhat. Bloodwork for RA was negative
We know that connective tissue problems are a feature of PMR; some patients are severely affected, others not as much.
If I were you I’d make a list of all issues and present it to the rheumatologist for discussion. You could wait until your next review or write to him care of the department to inform him of how your daily life is being affected, eg, what you are prevented from doing. It’s perfectly acceptable to do this and is, of course, your decision.
That the extra pred didn't improve the CT doesn't surprise me at all. Have you tried more pred since the shoulder and hip problems started? Because that sounds more like hip and shoulder bursitis which can be part of PMR - BUT local injections are far more effective than oral pred.
What does the Aleve/naproxen help? That is unlikely to help PMR pain so you should be able to work out what is what. Negative tests for RA doesn't mean it isn't RA though - surely a rheumy has heard of seronegative RA?
I had a lot of similar issues in the years leading up to my PMR/GCA diagnosis. Knees, ankles, elbows, shoulder and trigger finger too. Not all at the same time! Then hip, which rendered me disabled more than any of the others. Xrays, ultrasounds and MRIs showed inflammation. No arthritis. Once PMR and GCA were diagnosed, I started 40mg pred and it pretty much sorted everything. My hip was the last to heal, and I still get the odd twinge, but I'm now on 2.5mg pred and hoping very much that all these problems don't come back!
I am a biologist, but not an expert, but I would say that there does appear to be a connection between PMR and all these problems. I definitely think you should press your rheumy into further action.
Steroids haven't done much for me either - not sure if it is carpal tunnel but awaiting nerve testing for the loss of feeling and weakness in both hands. Pain in swollen middle and ring fingers to left hand was initially relieved on higher dose of steroids however
I don't want to significantly raise my prednisone until after blood work this week to measure cortisol (fatigue). I did raise my pred from 3mg to 5mg for two days, and I'm best when on both the increased prednisone and 24 hours NSAIDs- significantly less hip and shoulder pain and less hand/wrist pain and swelling. I'll try to sort out what helps what once the blood work is done.
I've scheduled appointments with orthopedists for the shoulder and hip bursitis and the carpal tunnel (in the US we need separate appts for each body part to get insurance coverage!). Appt with my rheumatologist is after that.
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