The million dollar question - how long does PMR last?
Posted , 14 users are following.
Hi all!
You know how we are so often assured that PMR burns itself out in a couple of years? After reading Pandemonium's post I went off to do my usual searching the Internet for medical studies and found the one that is probably the answer to why we are told this despite the number of us who know, to our cost, it ain't necessarily so! If only it were!
A group did a study in the mid-1990s and found that they could divide the patients looked at into 3 groups. Group A had a low ESR at the onset of the illness with a relatively mild seet of symptoms, responded extremely well to 20mg/day steroids, were able to taper the dose easily and were off steroids within 6 to 8 months, experiencing very few flares in that time. They remained disease-free 2 years later. Group A represented about a third of the population studied.
Group B had a higher ESR (and another inflammatory marker was raised) and worse symptoms. They did not respond as well to the initial dose of 20mg/day but did respond very well to 30mg/day. They had more flares during the tapering period, requiring the dose to be upped by 5mg/day to control the flare before continuing the taper process. On average, they got off steroids in about 2 years and then remained mainly disease-free for the next 6 months or so. This group represented 44% of the study group.
Group C did not respond to steroids as well, having residual pain and stiffness even at 30mg/day and had considerable problems tapering, experiencing frequent flares, particularly once they got to 7.5mg/day and most needed to remain on steroids at a low-ish level for a long time. This group was about a quarter of the original group.
The researchers feel this result indicates 3 very definite presentations of PMR. I didn't note whether they noted a gender difference - we've said often here that men may respond very differently to women. They did postulate a few ways in which it might be possible to predict which group you might be in before starting with treatment because one thing they did suggest was that a good control of the inflammation at the beginning of treatment was associated with the longer-term prognosis. They seemed to feel that if you lost control of the symptoms with the steroids early on then it might well be indicative of a longer and more difficult journey down the tapering path - though whether this is the cause or the effect of being one of the group C-type patients is not clear. Nor was there any suggestion as to whether there might be different mechanisms of the PMR syndrome in the different groups, which is also a possibility. For example, another paper I read this afternoon did actually mention they believe there is a degree of poor adrenal function in patients with various autoimmune diseases including PMR - these could well be the Group C patients who need much longer treatment in the form of a \"replacement\" of cortisol production at about 5-7.5mg/day which is the amount your body should normally produce.
So there you are gals and guys - scientific confirmation that we do indeed respond differently to steroid treatment! Don't let anyone bamboozle you into reducing your dose if it doesn't feel right \"but Mrs Cuthesteroidose is already on 2mg/day after 6 months\". :lol:
what a lovely day it is here - nearly as warm as the UK might be tomorrow!
cheers, EileenH
3 likes, 36 replies
lyn64318 EileenH
Posted
EileenH lyn64318
Posted
PMR is a long term problem - a chronic autoimmune disorder, just like rheumatoid arthritis for example. You take pred for the entire time you need it, not short courses which will only make the situation worse as after each time it is common to find it is more difficult to get the symptoms under control. And that is ALL the pred does, manage the inflammation being caused by the underlying autoimmune disorder until it burns out and goes into remission. Managing the inflammation RELIEVES but may not entirely eradicate the pain and stiffness. It often does not help the fatigue that is also typical - that must be managed by the patient by pacing and resting appropriately. That doesn't mean doing nothing - gentle exercise is beneficial providing you know your limits and stick to them. PMR - as I'm sure you have read above - lasts for anything from 2 to 6 years for 75% of patients. A few are off pred in under 2 years but it is unusual. A few of us are old lags!
In case you haven't found it this is a link to front or home page of the forum:
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
The first pinned post is a reduction approach that many people have used successfully to get to the lowest dose that manages the symptoms as well as the starting dose did - that is always your guideline. You start with 15-20mg/day for a month or 6 weeks and then reduce slowly to find that dose.
The third pinned post is our reading list. Then you will find a very long list of previous posts on many many topics going back for more than 10 years. Once you post on a thread you will get a notification in some way depending on what you requested when you joined. But you won't get notifications for responses to any thread you haven't either commented on or clicked on follow in the box to the right at the top of the first post.
Since your GP obviously doesn't know much about PMR - I'd suggest offering him the "Bristol Paper" to read - it was written by an expert to help GPs manage PMR without necessarily referring to a specialist which is not always done or required in the UK.
lyn64318 EileenH
Posted
Thank you so much Eileen. I will be seeing another doctor I think. I haven't been told that I was to keep taking the prednisone. It makes sense now why it just keeps coming back.
barbara06143 EileenH
Posted
EileenH barbara06143
Posted
Yes - i know what you mean - I function really well at 8mg, even better at 9mg but my new rheumy (an international expert in the field) is getting itchy and want to add in other stuff. I think he is crackers - he will be happy if I can get a couple of mg lower by adding methotrexate for example. I have tried that - not impressed at all!