Just a little background, I have various conditions, who said getting older was time for enjoyment! So just to quickly narrow it down, I have asthma, under active thyroid, high blood pressure, Afib plus Mitral Valve regurgitation and during the past year diagnosed as needing a full hip replacement. About 6 months ago I started getting real achy neck and shoulders, feeling more tired that usual until it got where I couldn’t keep food down and lost 2 stone in weight. My son rang an Ambo who took me to A&E. after 16 hrs of test etc the decision was I had PMR. Fast forward to recently where after various blood tests my GP agreed, he said my inflammation markers were very high and wanted to admit me to hospital. I asked if we could try to control it from home. So a course of antibiotics and he started me on 20mg of prednisone. Within a few days or so the pain subsided a little and I had a call from GP to say after a week to knock the prednisone down to 15mg. I did and the pain came back as bad so he put me back on 20mg, but only for a week. More blood tests showing still very high inflammation so I’m now on 2 weeks of antibiotics and reducing prednisone every week by 5mg. Im in extreme pain on 15mg and tomorrow I’m due to drop another 5mg down to 10mg. I’m dreading it. I have more bloods during the week and apparently one test shows elevated BNP to 780. I’m having extreme issues with breathlessness, which is probably connected with those result.
I'm sorry for the long post but reading others journey I just feel my doctor has no intention of letting me stay of prednisone and unfortunately a lot of painkillers interfere with my asthma
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Gilly1372
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I think if you do have PMR your doctor needs a lot of education. PMR doesn’t go after a short course of pred. It takes a lot longer as I have had it for 7 years. Can you see another doctor?
It's not a vile condition compared to many,, but maybe the way your GP has approached it is!
You need to be on initial dose for long enough to mop up all the built up inflammation - and then reduce in a sensible manner [and that does mean in 5mg drops] to find the lowest dose that controls your PMR on a day by day basis.
Sounds as if your GP has little knowledge of PMR and the way it's treated.. and is more used to prescribing Pred for acute occurrences like Asthma and COPS flare...
Why antibiotics?
He obviously hasn't read guidelines - which do quote [although we think too quick for some]
suggested regimen is:
. Daily prednisolone 15 mg for 3 weeks
. Then 12.5 mg for 3 weeks
. Then 10 mg for 4–6 weeks
. Then reduction by 1 mg every 4–8 weeks or alternate day reductions (e.g. 10/7.5 mg alternate days, etc.)
However, there is no consistent evidence for an ideal steroid regimen suitable for all patients. Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course. Some benefit from a more gradual steroid taper. Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.
Maybe direct GP to this - or better still find one that understands PMR -
Thank you DorsetLady for your informative response. My bloods came back with infection and inflammation high markers but they have no idea why. I’ve been referred back to cardiology re the high BNP score. I believe they have no idea also! I’m going to call the doctor and beg to go back on 20mg for a while. There’s no way I can drive at the moment
That’s what I seemed to understand after reading other posts and was surprised that they were reducing it so quickly. He did say last week that if my markers rose to over 100 (they were 97 last week) then he was going to admit me to hospital, and I really don’t want that
I’m sorry you’re having such a tough time. I do wonder whether your GP’s apparent keenness to refer you to the hospital is a tacit admission that he doesn’t really understand your condition. I wonder whether you might get better treatment and advice from the hospital?
I understand your reluctance but I wonder whether a specialist opinion might help you?
My inflammation level was 115 on PMR diagnosis and I wasn’t admitted to hospital although I didn’t have other health issues. The relief from severe pain came within 24 hours of starting 15mg Prednisolone which I remained on for three weeks and reduced to 12.5mg after rheumatology appointment to discuss symptoms/progress.
Your GP may well be the lead doctor at the practice but he does appear to have extremely poor knowledge of PMR and its management. I would ask him, politely, roughly how many PMR patients he’s treated and if they needed differing management plans. If he doesn’t give a satisfactory reply I would seriously consider changing GP.
I hope you gets things sorted out soon. The uncertainty and lack of faith in your GP must be awful for you. My very best wishes.🤞.
Thank you 123-go. I had similar problems when they diagnosed my thyroid problems. Didn’t know enough but fortunately saw a doctor at the practice eventually who knew all about it. Unfortunately she has retired now
I can understand his concern at raised markers -and unfortunately you don’t know what is causing them. It could be PMR but it may be something else as well - but a decent dose of Pred and for a reasonable time (ie longer than a week) might be a clue…
As your lead GP, and probably the others, have insufficient and incorrect knowledge of PMR, being put into hospital for a day or two would be a good move. You would be put under specialist care of a proper rheumatologist, who would write a report that you could wave under your GP's nose and override him. I have been given such letters and they have proved very useful.
BlueKiwi, yes I have certainly thought the same, but after my last dash to the hospital I’m not entirely convinced I want to go through that again! It was a long painful wait to be seen and fairly inconclusive. I found out from the practice nurse that I had been diagnosed with PMR
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Tapering experience
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Hello - I'm new to all this.
Sensible GP, Rheumatologist not so much…
