My journey and experience with PMR since September 2021. I had some core inclusion criteria for PMR, including blood results ( ESR and CRP ) were high. I was prescribed Prednisolone and within six weeks, I had reduced my prednisolone from 20mg to 2.5mg. This was my decision . I was surprised that I did not encounter any symptoms of PMR(no aches/pains or stiffness), as I did prior to September 2021.Mid-October 2021, had bloods done and ESR and CRP were high.
Consultant Rheumatologist recommended I commence on prednisolone 12.5mg (2 weeks) then 10 mg (4weeks) thereafter reducing by 1mg every 4 weeks. During this period there were many a times, I felt my heart racing, palpations, problems with sleep (having been taking Stilnoct 10mg, 2-3 times a week, prescribed by my GP). I continued to follow
the tapering regime until I got down to 8mg. I decided to taper by 0.5mg every 2 weeks of prednisolone. My GP did not have a problem with this method of tapering. I was on 6.5mg on the 1st Of February 2022. had bloods done , the ESR and CRP were within the normal range. Dexa scan was also normal. I have been taking Vitamin D and Calcium supplements which I have purchased from Healthspan.co.uk. I am also taking Bonviva 150mg, once a month which was prescribed by the Consultant Rheumatologist
On the 2nd of March 2022, I was on 5mg. I must say that at present, I am not encountering any symptoms of PMR and hoping to continue with my journey reducing the prednisolone by 0.5mg every 2 weeks. Time will tell if I am doing the right thing in tapering my prednisolone medication.
My best wishes to all the members, stay strong, be positive and keep well.
If you are able to reduce the dose then you should - you don't stay at the starting dose forever. Your tapering regimen of 1/2mg every 2 weeks is what most of us would say was reasonable - 1mg/month but splitting it like that often makes it more comfortable.
However - it isn't the GP or the rheumy you have to please with the taper - it is the PMR. You got to 2.5mg last time and that was too low, it allowed the inflammation to build up again. We'd probably have said try 7.5mg first - possibly 10mg as you seem to have been going 2.5mg at a time? But it seems to have worked very well.
I started on pred with a 6 week taper of 2 weeks each of 15/10/5 and I had no problems at all until I missed the first 5mg dose. Within 6 hours of that I was in a worse state than before. I often wonder if I had stayed at 5mg then it would have continued to be fine. Instead I had to start over again - and have only once in 12 years got to 5mg again. I have had a few real relapses and after each one, the management and reduction have been progressively harder.
Hi PMRpro,The 1st phase of my diagnosis with PMR was in September 2021 and I was in total disbelief .When I researched into taking steroids ( prednisolone) and the side-effects, I made my own decision in reducing, coming off prednisolone.This diagnosis/ symptoms was only after receiving the Pfizer vaccine in July/August 2021. In Mid-October 2021, the bloods results (ESR n CRP) were high., although I wasn’t in pain or had any symptoms of the flare. Therefore, I had no choice and had to come to terms with my diagnosis . I am following the clinical guidelines in tapering the prednisolone but have made slight adjustments . From 8mg ,reducing by 0.5mg every 2weeks. At present I am on 5mg and my slow reduction of prednisolone is working. Hopefully I can continue to further reduce the prednisolone without encountering the flares/ symptoms of PMR.
Unfortunately the clinical guidelines weren't drawn up by people who have or have had PMR! You can't take them as a rigid guide and they need to be adjusted for the patient. That bit in the small print, in almost every reduction plan I have seen, is ignored. And ost of them have too large steps down so you can't tell if it is a flare of symptoms or a steroid withdrawal.
Wow, you are so lucky. I started on 60mg 3 years ago and have tried to keep to programme of tapering. Last year I got to 9.5 before having a relapse and had to go back up to 22mg to stop the pain. Got on ok till I got to 15mg and now trying to taper slowly to 13mg. I am one of the lucky ones on Roactemra which is supposed to help coming off the prednisolone but its not a quick fix with me. I am grateful that in general I'm not in great pain but there are side effects from long term use of Prednisolone and its certainly not pleasant. I would say it is an individual journey we must take ourselves and look forward to reaching the terminus soon!!
At present I am doing ok with tapering of prednisolone by 0.5mg every 2weeks. With PMR, it’s difficult to say if I would be successful in overcoming these condition within a 11 month period. Time will tell. I am hoping it’s only a blip in my immune system .It’s interesting times ahead for me. Best wishes in your health and do take care.
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