My journey and experience with PMR

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.

[piglette]

If things are going well I would be very happy.

[Hidden in reply to piglette]

Hi piglette,Many Thanks for your kind thoughts.

[PMRpro Ambassador]

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.

[Hidden in reply to PMRpro]

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.

I would like to thank you for kind thoughts.

[PMRpro Ambassador in reply to Hidden]

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.

[technogran]

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!!

[Hidden in reply to technogran]

Hi Techogran,Many Thanks for your contribution.

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.