I was diagnosed PMR 2022 started on 12.5
I have reduced down to none
I have minor stiffness in hips none in shoulders but constantly tired
GP always insist PMR last around 2 years but constantly read that other have had PMR for up to 10 years. Confused
The info says an average of 2 years, so some people may be a bit under and others over, some being ten years or more. The trouble is a lot of doctors seem to think average two years is actually two years and when year three starts it is hey presto the PMR goes away!
You are probably tired as the adrenals can take a year or more to get back to normal after taking pred.
As piglette has said tiredness/fatigue sounds like adrenals still struggling.
As for hip pain just keep an eye on that … and how did you reduce the last few mgs… many have found that even 0.5mg can make a big difference if PMR is still active. At only 2 years, that’s a possibility- so don’t let pains get any worse… and if they do, then make sure you do something about it.
For some of us PMR lasts consideratly longer than 2 years. I've suffered from it for 15 years now, and recently had to raise my daily dose of Pred from 3mg to 4mg to overcome constant pain and tiredness.
So it's not a one way street, neither is it a short, nor smooth road to travel on, as many of us have found through experience. Tell your doctor to go and contact Rod Hughes at Chertsey before making glib comments about PMR only lasting 2 years. Mr Hughes is a world authority on the condition, and would be able to give your GP proper advice on the duration of it.
Gosh that is worthwhile knowing have been on Pred for 6 years .been asked to drop , down to 4mg .Awful pain arms shoulders neck hands From what I learn on here this is to do with adrenals .This forum so helpful .yes tired out with this 😴.
Awful pain arms shoulders neck hands From what I learn on here this is to do with adrenals
Some muscle pain can be caused by adrenals struggling - but if they are as bad as you imply, I think I’d be considering too low a dose of Pred as being partially if not fully to blame.
Thankyou for that very helpful seeing doctor tomorrow will suggest that!
Have you just dropped dose, or only been asked to? If yiu have reduced recently, more likely to be that…
There is no set time to have PMR, every case is different. The average time is just under 6 years I think but that is just an average. The trouble is most doctors rarely come across a case so they go by old information on how to treat it and there are a lot of persistent myths about. It sounds to me that you may still have a bit of PMR and/or you may be suffering from post-steroid adrenal problems. Either way I'd go back to your doctor and express your concerns so they can run more tests, such as checking your inflammation and cortisol levels.
The myth - that PMR tends to go away on its own in 2 years - began way back: before it was known to be an auto immune disease, and before there were corticosteroids to treat the symptoms. Back then people typically died in their 60s, so the statistics were rather unreliable.
When I was a child in the early 60s my grandmother was put in the nursing home because she couldn’t walk anymore and lost the ability to feed herself. Ended up dying there too. I wonder now if she had PMR.
Many diseases that are understood and treatable now were not back then.
The paper that probably started the 2 year myth was published in 1985 - well after corticosteroids were being used to manage it and the duration was based on how long patients took to discontinue pred.
Fortunately I kept a reference (see link below). The 2000 paper by I. Portioli is entitled The history of polymyalgia rheumatica/giant cell arteritis. It says:
"The first description of polymyalgia rheumatica was made by Bruce (1) (Table I) in 1888, who defined as “senile rheumatic gout” a painful condition involving the large joints of the girdles, with non-ankylotic stiffness. While compromising the general condition of the patient, the gout generally resolved within one or two years."
clinexprheumatol.org/articl...
Life expectancy was much lower in 1888, of course; and artificial corticosteroids weren't available until the late-1940s.
I am fully aware of the history of PMR and that paper. That Bruce paper is what can only be described as skewed!!! He had a small group of MALE patients. There are roughly twice as many women with PMR as there are men as is the case with many autoimmune disorders and men do often do better than women in getting off pred.
If they are basing opinions on a 1888 paper - time they caught up a bit!
According to a 2017 study, PMR lasts an average of 5.9 years. Mine lasted for 8.
There is no fixed timeline for PMR or GCA symptoms, both of which are due to an underlying autoimmune disorder. In some people it burns out and goes into remission in a relatively short time, about a third are able to get off pred in a couple of years. But half of patients are on pred for more than 6 years, we have some people on the forum, including me, who have had PMR for more than 10 years.
It is a question like "How long is a piece of string?" There is no single answer - everyone is different, Pred isn't a cure - it is a management strategy.
Finished pred
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