Diagnosed with PMR approximately 2019. Came off Prednisone in October 2020. Saw Rheumatologist who did repeat bloods. At the time I was discharged my ESR was 26. Fast forward to 2023. Severe pain in base of skull and neck (right side only) affecting shoulder, shoulder blade and upper muscles in arm. Nerve pain, clicking and feeling of something stuck when I moved my neck. Bad tinnitus (had this since first diagnosis) GP did bloods ESR STILL 26 (borderline so I’ve been told) He put me back on 20mg, now down to 12.5mg.
Pain improved but not altogether gone, neck and arm still stiff and “loose” in fact, on waking the other day I couldn’t move my right arm but it improved after a while. Also have had IBS/bloating daily.
I am convinced its not PMR but degenerative arthritis. I am nearly 61. I have bumps on my fingers and base of thumb, collapsed discs marked spondylotic? changes in my spine and a bump on my neck (right under skull) that comes and goes. I had an xray on my neck a few years ago which showed “wear and tear” I have a telephone review on 4th Sept and was going to ask for another neck xray. Could it be a neck problem rather than PMR? My symptoms were so different to last time.
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Purplelamp
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I immediately started thinking a neck problem, more structural than PMR, The inability to move your arm SHOULD be reported - even such small things can be the sign of a TIA, a ministroke, and they can be the heralds of a journey to a real stroke so needs to be ruled out although more probably due to the nerve being pinched in your neck.
The difficulties being so localised suggests it is less PMR and more something in your neck and shoulder.
Thank you. I did ring the doctor when it happened. My GP was away and the one I spoke to assessed me over the phone and decided it wasn't a TIA as it had happened a few days before (on a weekend). It hasn’t done it since. My pain does feel like nerve pain. I will mention it again in my review.
It’s all very well telling you it isn’t this or isn’t that! Investigations are needed to determine the cause of your your symptoms so that you can be treated.
I did pay to see a physiotherapist just before going back on steroids. He works for the NHS. He did electrical stimulation and gentle stretching of neck & arm, I think he couldn’t do much as I have osteopenia and he was working blind. It didn’t solve the problem. I will ask for an xray. I’ve never been to a chiropractor.
I would agree that your symptoms are unlikely to be PMR especially if 20mg Pred made no difference. I have had neck, shoulder, upper back issues over the years and all caused by tense trapezius, scalenes, rhomboids etc. At one time the small muscles in the occiput at the base of the skull where the neck joins were like rocks and so painful. Once muscles spasm it is hard to educate them to relax but a good practitioner can help. Finding one is another matter.
I have had horrendous problems since March last year - and was started on tocilizumab (TCZ. Actemra) as a result when nearly 20mg pred was barely keeping me mobile. It has taken a long time for the low back part to resolve, just getting there after 16 months. I think Claire Owen's paper is one of the most important relating to what we as patients often experience and our doctors dismiss as "not PMR" - when it is.
That paper is very interesting indeed. The posterio medial knee involvement is making me wonder about my knees which have been complaining since i got below 2mg. Had private MRI on left yesterday as it's worse than right. Will be interesting to read the report. Thanks for that.
You need a cervical MRI..sounds like Degenerative Disc Disease and possible osteophytes (bone spurs) pressing on the nerves. I am riddled with them..the treatment is epidural steroid injections and/or ACDF surger (spinal fusion) if they stop working (of which I have had - 2 level-and still have to get the injections, ugh) . They will probably try Gabapentin also for the nerve pain. When that gets to it's peak, it is a 10 pain..although most never get as bad as I was from what I have learned. I mean, you could have both like me. It took 30 mg for me to be pain free mostly from the PMR..you could try that first. I would.
Thank you for your reply. I think that could possibly be the problem. I’ve had neck trouble for years which has gradually got worse. Especially when lifting my head up again. I can feel something gets stuck then moves jangling all the nerves in my shoulder blade & upper arm. Its like toothache, awful. I do have DDD in my spine.
UPDATE Just spoke to GP. Not a successful call. When I mentioned neck/arm he says I haven’t got PMR & wants me off the steroids. Im on 12.5. He wants me to reduce 2.5 a week until I’m off. I argued this was too fast but he insisted as I’ve only been on 4 weeks I can do it. He was annoyed I was on 12.5 as he said I should be on 15. I reminded him he had told me to go to 10 & I put myself back up as I felt awful. He denied he had ever said 10. Wasn’t worth me arguing. He is sending me for an xray of my neck but says if I want a scan I will have to pay private “. He also wasn’t happy I asked for blood tests. (I used to get them monthly last time I had PMR) Can anyone tell me - can I reduce 2.5 a week after being on steroids for 4 weeks? Thanks.
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