Hi guys back again. In 2017 diagnosed with PMR and put on 20mg pred it worked. Over the last 6 years up and down with various levels of pred. Have seen Orthopaedic expert 3 times who states I do not have PMR. Last time was in September 2023 after stating I was not PMR was keen I gradually came of prednisone noting I was on 7mg at the time. Soon after I saw my pwn doctor and agreed I came off the prednisone. So over the past 6 months have been reducing now on 2mg and I am in a right state from the shoulders, arms, hands, back and thighs. I am sleeping terrible as I am racked with pain struggling at times to walk, dress my wife has to put my socks on, pressing a light switch on makes me wince Im probably at my worst ever.They say concern or one of them is the affect on bone density and yet check 2 years ago gave my bone density as 3.5 which Im told is excellent.
I am a diabetic type 2.
I have an appointment on the 22nd March with my doctor advice on what i should be saying to her much appreciated.
Im very low at the moment. Thanks Carl
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SRIXON
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Hi guys. Saw doctor this morning, couple of tests oncluding blood tests. Pred raised to 6mg this afternoon already feeling slight improvement. Appreciate all your inputs love to you all Carl x
Sorry to hear you are in so much pain again… and not sure why/how an orthopaedic consultant can say you don’t have PMR - not their field of expertise.. Particularly as you were still on 7mg at the time.
No one can say you don’t have it, until you have been off Pred for at least 6 months and no symptoms. His crystal ball must be a super-duper edition..
I know in one post you did say you were waiting for appointment with rheumatologist- did that actually happen?
As for GP appointment, all can do is explain what problems you are having and request blood tests to see if they are higher than should be expected [not that they always are], suggest an increase in Pred to see if that makes any difference… and if you haven’t already seen one, request referral to rheumatologist… but don’t hold your breath on that score.
Quite what makes a doctor think they can definitively state someone doesn't have PMR is beyond me. Especially if they are on 7mg pred at the time! The primary problem we have is that there is no definitive disease marker to diagnose PMR as we mean it. And an orthopaedic expert is probably one of the last "experts" I would listen to in the PMR world.
I'm not sure I'd be entirely convinced by a +3,5 t-score for bone density as that is also abnormally dense bone and suggests something else is at play. But immobility due to unmanaged PMR is also a risk factor for a range of problems.
I think a "come to Jesus" discussion with your medics is called for (if you'll excuse the use of the colloquial expression).
I agree with Koalajane totally. This is exactly how my PMR would behave if I reduced from my 5 mgs to 2 mgs. I imagine orthopaedic experts don’t deal with PMR much as it is deemed Rheumatologist territory . Any chance of changing doctors. If only they knew how painful and disabling this condition can be. No wonder you are depressed. Some people do get a version of PMR that is long lasting. I am in my 9th year. My very experienced Rheumatologist never suggests that I stop Pred, or that my diagnosis is wrong. The only advice I haven’t followed is Methotrexate. I have short periods of feeling well that give me hope, but I seem to catch a cold every time I go out and it sets me back. Please do not put up with this for any longer. Is your GP sympathetic? So sorry SRIXON.
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