What were your symptoms when u were diagnosed wit... - PMRGCAuk

PMRGCAuk

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What were your symptoms when u were diagnosed with PMR?

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pwpl
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I am just wondering what led to people's diagnosis of pmr. My major problem is actually shortness of breath and unable to walk for more than a few minutes. My thighs are very weak and feel like lead, same with my arms. I saw a respiratory physician & after doing some tests he said my symptoms were not due to having respiratory problems. But to me it feels like that is what is causing my inability to walk around. I have had my heart checked and had a stent put in. But still have the same symptoms. My esr is normal & crp is very minimally raised. My dr doesn't think i have pmr but thinks i should be on a rehabilitation program to strengthen my body,as it became very weak after breaking my knee & foot in a fall, and being sedentary ever since. I was given a shot of med pred 120ml & felt better for 8 weeks but after the 2nd shot it didn't help. My dr now suggested i take 25mg per day for one week, then lowering it by 2.5 mg each week till i get to 5mg. I am not keen on this, i already have problems with my eyes due to type 1 diabetes & also hashimotos. Very unsure what my symptoms are due to. Any ideas??

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What you describe is not typical of PMR - stiffness and pain in shoulder and hip girdles, morning stiffness that often lasts through the day or returns after sitting for any length of time, difficulty rising from a chair or turning over in bed, fatigue, sweats, loss of appetite, weight loss, depressed mood are all much more typical. ESR and CRP are raised in about 80% of patients but 20% have ESR/CRP levels in the normal range so are not reliable. Most convincing for the PMR we discuss here is a dramatic response of the symptoms to 15-20mg/day prednisolone - there should be about 70% improvement overall within under a week and the symptoms return in a similar time frame when the pred is stopped.

It could be a vasculitis affecting the blood supply to your lungs (and arms and legs) which probably wouldn't show up on normal lung function tests. If the pred your doctor is offering improved things even a bit, it could suggest a large vessel vasculitis (LVV) affecting the arteries in the chest. There are several sorts of LVV and I don't know if all of them respond to pred - GCA and PMR which are related to one another certainly do but with severe GCA you might need more pred or for longer to notice much difference - I don't know.

However, if you have been immobile for even a couple of weeks your fitness will have deteriorated a lot, muscle tone and mass deteriorates very quickly and that makes any exercise very hard work and will make you out of breath. I was in hospital for 3 weeks a few years ago and when I came out I could barely walk a few hundred yards - I built my fitness slowly over months.

I think your best plan will be to do as your doctor suggests and see what happens. The pred would show fairly clearly if it was due to PMR, the rehab would show if it is simply loss of condition and if the rehab doesn't lead to an improvement they will need to consider something else. You haven't mentioned how old you are. PMR is far less likely in patients below mid-40s though it doesn't mean it doesn't happen.

Good luck - and do come back and tell us how you get on.

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