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 doesn’t 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 COPD 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
My first question is why antibiotics? The markers are raised because of inflammation, not infection. Two totally different things. I am left to ask if your practice knows the first thing about rheumatological conditions.
Your GP should not have to resort to admitting a PMR patient to hospital. It is time they were reeducated about their role. Suggest they read this paper as a primer on managing PMR and GCA:
The author is now Professor of Rheumatology at Luton and Dunstable hospital and still uses the basic reduction plan - because it works pretty well. She is also closely involved with PMRGCAuk I think.
And your GPs may join the PMRGCAuk charity (as opposed to the forum) free - they might learn something. They would certainly learn something here but they might not like it ...
Well I did have a fall and injured my leg which was not healing . I’d already been on antibiotics and I think he thought maybe that had something to do with it. I agree some doctors have little knowledge of some things. I had same problems when I was diagnosed with thyroid problems and had to do my own research.
I had an appointment yesterday and explained I had been reading about this condition. I said folk were being reduced slowly on the prednisone. He said that because it was affecting my heart and my breathing he wanted to try to get me off sooner. He eventually agreed that he would just reduce by 1mg each week instead of 5mg. We will see how that goes.
He can only get you off pred when the PMR has burned out and gone into remission - otherwise the symptoms return and you are back where you started, There is nothing he nor you - nor anyone else - can do to influence that.
HeronNS redeuced at 1mg per week and was lucky, it worked well, I hope she will tell her story. However, once you get to your lowest effective dose, that is it. Reducing at 1mg per week means you aren't at each new dose long enough to know if it is still enough so when the symptoms reappear - and they will - you have no idea where it went pear-shaped. Was it 1mg ago or 4mg ago? And you end up yoyoing, Which has the effect of making it increasingly difficult to get the inflammation under control again and also more difficult to reduce the dose. It is the one thing we tell people to avoid at all costs. I am not being depressing and pessimistic - this is the way management of PMR is.
Yes I understand this. I think he is waiting for me to see cardiology as one of my tests came back quite high regarding heat failure, and I do know that steroids do affect the heart, I also have asthma and therefore I’m used to steroids on short term basis. I think I might ask to be referred to a rheumatologist and maybe they can educate my doctor
Troponin can be high due to other things - atrial fibrillation for example and it is more common in certain rheumatological conditions including PMR. My a/fib started about the same time as my PMR symptoms and the cardiologist is confident the autoimmune part of PMR damaged the sinus node and caused the arrythmia. It is ANABOLIC steroids that are bad for the heart. Pred is a corticosteroid.
Thank you, yes I also am on meds for AF but on more investigations it was discovered I had mitral valve regurgitation . I have an appointment in November. I’m on Amiodarone for the AF which was reduced as it was causing thyroid problems. It’s quite a condition isn’t it. Not very easy to live with at first but I suppose you get used to it all. Just so many health problems for me at the moment
How bad is the a/fib? I was eventually put on just bisoprolol and an antiarrythmic plus the anticoagulant which is the most important thing. I was allergic to ACE inhibitors which was what they wanted to use initially. After about 10 years the original antiarrythmic stopped working so I was referred for an ablation which hadn't been a option originally and in the meantime was switched to Flecainide which has been pretty good, The ablation has improved things a lot but also not perfect. I have a check-up tomorrow so will see what she says.
They didn’t want to give me an ablation for some reason, I did have a cardioversion which lasted 5 days. call Amiodarone the dirty pill but he said that the Flecainide was not much better. Do you have to have regular blood tests while on it. I’m on Apixiban, Nebivolol and blood pressure tablets. They took me off the statins,. I had a cardio angiogram where they found the tubes are leaking. Trouble is all the waiting times to get things done.
My doctor had me at 15 mg pred for month. Then told me to taper by 1 mg per week but to stop if pain returned. This happened at 9 mg. I went back to 10 for a few weeks, then began the slow taper method, Dead Slow Nearly Stop. Initially I used the four week version and tapered by 1 mg each time. Then I increased to the six week taper and after that slowed to half a mg each taper, although for a while I was still able to taper a further half mg halfway through each sequence of six weeks. Eventually I was tapering by 1/2 mg only. I was at 3 mg by the end of the first year (lucky me!) BUT it took me another year to get to 1.5, which proved to be too low and I spent several years at or about 2-2.5 mg.
I hope that's not too confusing. Happy to answer any questions. I was always careful to monitor my symptoms which is why I didn't keep on relentlessly to zero, which I might have tried to do, given how well the first yer went.
I appear to be in remission, last pred was 1/2 mg in early February and do not have any PMR symptoms as of this date, mid September! After 8.5 years I'm happy about this, and hope it lasts.
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