AVERAGE LIFE SPAN OF PMR ?????
Posted , 18 users are following.
In the past, I know the Medical (team) believed that PMR had an expected life span of around 2 years, but I remember someone (probably Eileen) posting on here, in recent times, that most Doctors in the UK now think that around 5 or 6 years is more realistic. I think they posted an article to read. Of course I cannot find that discussion now. The reason I would like to read it again is because I have a wonderful new Doctor, but she still firmly believes that if anyone is still on Pred after 2 years, then they are just addicted to it. Thoughts ........?
0 likes, 28 replies
margaret01981 Flutterbie57
Posted
I don’t agree that everyone should be off Pred after 2 years. If the adrenal gland isn’t functioning well, a person may need to stay on a low dose of prednisone indefinitely. It seems to make sense if the adrenal gland isn’t functioning 100%. My doctor said it is possible I would be on 2-3 mg for life. Although eventually I plan on trying to go to 0 if at all possible.. Currently at 7. I have had Pmr 10 months.
EileenH margaret01981
Posted
The length of time you need to be on pred for PMR has nothing to do with adrenal function - the autoimmune disorder that is the cause of PMR itself lasts considerably longer than 2 years. I do wish I knew where the idea ever came from that PMR lasts 2 years but a recent study found the median duration of pred for PMR was 5.9 years. Which fits pretty well with my experiences over the last 9+ years. A lot of people get off pred in 4 to 5 years - a very small number have great difficulty getting the dose down but that is the PMR not the adrenals and an even smaller number end up on pred for life because of adrenal problems. I've known a few who got of pred in 2 years or so - but they are also unusual.
margaret01981 EileenH
Posted
Hi Eileen,
The larger group that gets off prednisone in 4-5 years for Pmr.. would you estimate most of them would be on a low dose after 1 year? Like less than 7?
Would it be like a 1-2 years to get from 3 to 0 for the group who can get to 0 in 4-5 years on average. Just trying to see the possibilities.😀
I understand no two people are the same...
Also, if someone has to remain on prednisone long term, is it more apt to be PMR rather than adrenal insufficiency?
Thanks for your insight..
EileenH margaret01981
Posted
The study written about here
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
found that it took an average of about 18 months to get to 5mg. From experience on the forums I think being under 10mg within a year is not very common really - and that is backed by the reduction approach Quick and Kirwan's group developed and use. They take about 4 months to get from 15 to 10mg - providing there are no flares and to be honest I think that is a problem - and then keep patients at 10mg for a year before starting reductions again.They find that reduces the rate of flares to 1 in 5 instead of 3 in 5 - and I'd suspect for them a lot happened at just below 10mg when they tried to reduce too soon. It makes sense to wait it out at 10mg until the PMR has quietened down a bit more which it seems to do after the first 18 months to 2 years. Maybe that is why so many doctors had this 2 year belief - because it has been said in the past that patients who manage to get off pred in under 2 years are at a relatively high risk of relapse later. Patients DO get off pred in 2 years - and then it comes back again. Possibly if they had stayed at 1 or 2mg pred for longer it wouldn't have.
As for PMR or adrenals - difficult to say as many doctors say that adrenal insufficiency is very rare but some of the top PMR experts were surprised when I told them the number of confirmed adrenal insufficiency patients there are on the forums. It's not a very wide sample of the population, internet populations are always skewed, but out of maybe 2 or 3 thousand regular contibutors over the last few years I know of 4 or 5 who need pred for poor adrenal function rather than the PMR. Of course, you can't tell if the PMR is still there without getting off pred! It is believed that about 5% of patients with PMR need pred to manage the PMR for life - and on the same forums I know of a slightly higher number who I know have needed pred for something in the teens of years so far. I've had PMR for 14+ years, been on pred for 9 years. On the other hand - I also know of people on pred for over 10 years who eventually DID get off pred. So yes, I'd say needing longterm pred is more likely to be due to the PMR but it is difficult to be sure.
margaret01981 EileenH
Posted
charles92035 Flutterbie57
Posted
Flutterbie,
My Rheumy said it would be about "5 or 6 years" for this to run it's course. I also have GCA so maybe that adds some years but I am no expert.
EileenH charles92035
Posted
In my experience GCA often sorts itself out faster than "just" PMR - and it is very rare to meet a purely GCA patient who can't get off pred at all.
But thank goodness for your sensible rheumy - would there were more!
ptolemy charles92035
Posted
That is unusual, a lot of rheumies say one to two years. I am not sure if they think if they said five to six years we might become suicidal with shock!!
Flutterbie57
Posted
Thankyou for the sites supplied. My computer has been going slower than myself for 2 days, so I have not read them yet, but I will.
I just reread my post and realized that it sounded a little sarcastic when I called my new Doc wonderful. I did mean it in every other sense, that she is wonderful at communication, planning, listening and finally getting tests done. However she was adamant about the 2 years, so rather than question that, I thought it would be best to just produce some medical info from a good source, next time I go. Hope she takes it well.