Having been diagnosed by my GP with PMR almost 2 years ago, then referred to rheumatologist after suspected GCA (later thought unlikely) I have tapered down from 40mg of pred. However rheumatologist says she still doesn’t know what she is treating, despite classic PMR symptoms and responding well to pred. She suspects spondyloarthritis with polymyalgic presentation. She has had me reduce the pred quicker than I would have preferred, and added in an anti inflammatory (first Naproxen and now etoricoxib) to help me off the pred. She then booked me in for an MRI scan of spine and pelvis prior to which I had to be on no meds for 4 days. I almost seized up by the time of the scan: raging pain in thighs and hips and in shoulders, upper arms and neck.
I won’t get the results for another month and have the follow up appointment with rheumatologist in mid May. I have to continue taking the anti inflammatory but it seems not to be working as well as it did and at first every other day did give just enough relief, now daily 60mg isn’t really helping that much. I still have some pred left over and keep eying it up and am tempted to have a crash course of 5mg for a week but probably not wise. I am still getting bad fatigue when overdoing things, and have been trying to take it easy but so hard when life and work gets in the way. I was hoping that PMR would eventually disappear but worried these other autoimmune inflammatory arthritic conditions I may have are more permanent. I hate taking meds and do all I can to eat the right diet, gentle exercise etc etc. Any thoughts, advice or similar experiences wise people? I have found this forum so informative and helpful and really thought I was controlling the disease.
Written by
Reedmaker
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Good morning Reedmaker!🙂Sending best wishes to you at this difficult time.
It sounds like you were doing well with your GP and pred until the rheumatologist stepped in and decided she would do something else. ☹️
Would a second opinion be an idea from a different rheumatologist not attached to the hospital where your first rheumatologist works be a consideration? Or you could phone your rheumatologist secretary and explain how bad things are and you want to go back on pred.
I really hope you get this sorted out soon. Pain and fatigue is a wearying thing.
Why was GCA suspected ? .. and perhaps more importantly why dismissed by Rheumy before tests done?
And agree sounds as you and GP were managing it previously…and as tests have been completed it might be worth discussing going back on smallish dose of pred rather than NSAIDs .. any chance your GP could mediate for you with Rheumy to that end?
GCA was suspected after terrible jaw pain..the locum I saw then was very undecided which was when I had the referral. The rheumatologist is very nice and sympathetic and wanted me to be off everything so she could see what was going on with the scan. I guess I’ll hang on until then and speak with her. Thank you.
Since she now has her tests done - is there any reason why you couldn't go back to a low dose of pred if that works until she has completed her deliberations? How much relief did you get initially with the NSAID? Why not discuss it with your GP if you can get to see them? I too would wonder if a low dose of pred would make life more worth living ... The GP could probably ask the rheumy if that is an option until she sees you.
I had a PMR friend who had a very similar experience: initially diagnosed with PMR and pred managed the symptoms well but she could never reduce the dose very far. Then she developed tongue symptoms and other symptoms that COULD have been GCA. Her rheumy was utterly intransigent, he didn't even think it was PMR never mind GCA and even sent her to Prof Dasgupta for HIM to pontificate. He on the other hand thought it had been GCA but it was now inactive and it was just symptom relief, except he wouldn't agree to enough pred to relieve the symptoms!
In disgust she contacted Prof Mackie in Leeds, travelled to see her and she was equally mystified, However, a chance comment somewhat later aroused Prof Mackie's suspicions that this might be ankylosing spondylitis - and the MRI confirmed the diagnosis. I think she stayed on pred for the few months it took for a biologic to be arranged but she also used an NSAID for better symptom control.
Spondyloarthropathies can actually be better managed than PMR, there is a variety of options, not just pred. So don't despair.
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