Had my Six monthly check up with my Rheumatologist yesterday in kiddiminster.
Went over how I’d been fairing since my last appointment.said that I had a flare in October going back to 10 mg from 3.5mg coming down quickly to 5 mg then to 4.5. She said that I should be off the steroids now as Pmr only last two years.
Think it was pressure of work that caused the flare . Trying to do the work of two people. The other man having retired in July. They finally appointed someone after Christmas.so at last I have my 3 day week. I’m convinced my pmr is made worse by stress even though I don’t feel stressed.
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Flrchrs
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- two reports about the same study that found PMR lasts significantly longer than 2 years in a majority of patients. This is work from top names in the PMR field.
A fairly early study claimed it lasts 18 months to 2 years but I think it must have been a not paarticulalry good one! Another in 1985 said median duration of 37-3 months - about a third were off pred in 2 years, 40% needed pred for more than 4 years:
One of the links that PMRPro provided is to “Latest Advances in the Diagnosis and Treatment of Polymyalgia Rheumatica” which indicates 1 to 3 years treatment should be expected as below.
For patients with an appropriate response to therapy, tapering to a dosage of 10 mg per day should occur within 4 to 8 weeks after GC initiation (eg, reduction by 2.5 mg/d every 2-4 weeks until 10 mg/d is reached). Further tapering can occur by 1-mg decrements every 4 weeks until discontinuation if remission is maintained. A treatment duration of 1 to 3 years should be expected.
I placed a follow up comment about 1 to 3 years expected against actual average duration of 5.9 years to get off pred which is stated in the same report.
PMRpro has given you links - please email to your Rheumy with a little note to say it’s the latest information, and you’re sure she must have missed it because of her very busy schedule! 😳
You are correct - PMR just loves stress - good, bad or indifferent!
It always amazes me that some doctors seem to think that after two years PMR suddenly says “right all finished, thank God that is over” and everything is back to normal.
Yes. Left me in a right state. Told me to "get my arms moving". I literally could barely move my arms or walk. My gp gives me the steroids now. After a lot of persuasion!
I should have pointed out that research in the same report indicated an average of 5.9 years to get off pred so treatment expectancy (1 to 3 years) and actual are quite different as follows:
In the new study, the median time to taper below 5 mg a day for 6 months was 1.44 years (95% CI, 1.36-1.62) and the median time to permanent discontinuation was 5.95 years (95% CI: 3.37-8.88). At 2 years, the mean cumulative dose was 4 g and at 5 years, 6.3 g. The mean daily dose at 2 years was 6.1 mg and 7.2 mg at 5 years. The average initial dose was 16.9 mg daily.
Also the report has found that pred is not as damaging as first thought so if it takes a bit longer than 3 years with less discomfort I wouldn’t be to concerned.
Your penultimate paragraph is partly new to me ie the 1.44 years to get to under 5 mgs. I would quite like to read this study. Where can I locate it? Thanks.
PMRPro has provided a link earlier in this chain, the report is quite lengthy and takes a bit of reading it looks at treatment as well as new diagnosis recommendations
Thank you!” Permanently “ is the key word when the paper talks about patients getting to under 5 mgs in 1.44 years (median). I could have done it probably but I wouldn’t have lasted many months as the disease is clearly still active.
Some PMR symptoms may be replaced by Adrenal Insufficiency symptoms- but of course it could be a combination of both. That of course makes it even more for patient to know what is what!
I stopped seeing my former rheumy after 3 appointments, due in part to her approach and belief that PMR stops after 2 years (as does the pred prescriptions). Ridiculous!! How does she know the duration of my condition??
I don’t know where this leaves patients like me. I’d be happy enough doing slow taper but I’ve had a massive fright with the steroid induced myopathy and all the specialists want me below 5 ASAP. The new pain specialist has said the golden rule for steroid side effects is “ 7.5 for more than 10 weeks “. Apparently most people who have that amount will get some side effects. I’d love to believe that study that says no difference between two groups of older people, one lot on pred the other not on pred. And little difference in two groups. I’m sorry I just can’t believe it. I think pred is a life saver. But no denying the bite in the bum. I’m at 9 now. The gp I was under in hospital said to dro to 8 today, meaning I’d have been on 9 for 12 days. “ it’s only 1 mg” she kept saying. I just nodded. It’s too soon!!!! I know I have the SIM but all the more reason to not risk going back up. Aunties and Uncles I beg you for advice xxxxx
Stick with what is right for you, only just that. Don t waste your energy arguing with them, they have nooo idea. You are the boss of you completely, always. Succes,Alida
“ I should be of prednisone because pmr only lasts two years”....infuriating suppose to be experts!!! How would that make YOU feel, do you now think you r not normal because your PMR obviously has not settled!!!
I hope you trust what you feel is right for you and go with that, the expert apparently had no idea. Stick with what is right for you and skip your rheumatologist or find another one if you feel that is helpful for you. Alida.
Totally agree Firchrs. Your and my difficulty appears to be that we are so used to being stressed that, as you say, we often don't feel it. That may be that's because our immune system is working extremely well - possibly over-time. And PMR is the result of that overwork. Since I was diagnosed (October 2018) and prescribed prednisolone, I have been much better at recognising situations that I put myself in which cause me stress - and I've either been walking away or doing the thing anyway, making it as short-lived as possible, and then giving myself permission to have a break, taking a walk, having a cup of something or taking a nap. (I'm fortunate that I am in a position to control my time in that way.) The other thing it has helped me do is plan my diary more kindly to myself and to people with whom I have to interact, so that neither I nor they have to suffer from the aftermath of something that is likely to be a stressor.
Yes totally agree will try and plan the day and do less at work . Always been very active cycling,walking and work but have had to slow down .Go out for a short ride come back and fall asleep in the chair 😴
Ha my (new) Rheumy went mad that I was still on 15 mg - after a flare so I upped it, and said 10 mg tomorrow and after a month reduce by 1 mg every month. Hasn't he seen all the rheumatologist tapering plans on steroidtaper.azurewebsites....
He didn't even ask me how I was or how the condition was.
I sympathise, my rheumy also believes PMR only lasts 18months to 2years = yet here I am 4years later. Oh well , we keep trying to educate them. Good luck try to take things as easily as possible, listen to you not them xxx
I’m almost 3years now .have learnt to listen to my body more .take things a little slower. And going from 5days work to 3 I’m hoping will make a difference
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Is this a start of a flare
New consultant ! 
Update....Post-Immunization/booster. Covid over. PMR Flare Blazing. YIPPEE! .... .
Has Actemra been helpful for PMR?
