Eileen has said many times that about a quarter of people get off Pred in about 2 years, about half take 4-6 years and about a quarter take more than 6 years (or remain on Pred indefinately).
Recently in the Thanks To All topic Charlie44644 said that stats give about an 80% chance of being done with PMR in 2 years.
I am wondering about the source of these numbers?
As my GP is always trying to rush me off Pred it would be helpful if I could give him the research papers about this so that he would be better at letting me go my own pace. When I was first diagnosed he told me I would be on Pred for just a few months so he is not comfortable keeping me on it, which is now almost 2 1/2 years.
Hi CJ, out of 8 people I know that have PMR only one has managed to get off of preds in about 1 year (13 months actually) but he now doubts that he had PMR as he already had osteoporosis prior to it. I am coming up to my 12 month anniversary and am still on 14mg a day although I did have a problem due to my doctor, but 3 people have had it for over 5 years and the remainder vary from 5 to 13 years so I assume stats are there as a guide only. I am now resigned to the fact that as long as I can reduce to a comfortable level of pred (ideally below 8mg) I will be quite happy to be out of pain and on a fairly low dose to rid myself of some of their side affects. Good luck and keep battling on. Dave (tavidu)
The figures I quote were from a paper I found very early on in the journey - and I can't find it anywhere now! I suspect it was one that at the time was not behind a paywall. I know there are a few people in the UK who dispute the figures - saying that what are seen are the people who are referred to rheumatologists and these tend to be the more difficult cases. My experience with 3 different forums over 6 years now is that not very many people get off pred quickly - though I do appreciate that they maybe never looked for the forums in the first place as they had few problems. However - many of the new members come because they know nothing about PMR and GCA so you might expect to see them around for a longer or shorter period of time.
I have no idea where your GP got the idea from that you would be on pred just for a few months. Everything I have seen mentions a patient journey of at least 2 years - and that assumes a plain sailing reduction with no flares. On the other hand - my experience with real people is NOT one that sees people off pred in 2 years so I really cannot accept a figure of 80%.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
This takes you to further links (as I'm sure you know). There is the Bristol paper and the next link is to the Scottish site and most of the way down that is a link to the Mackie and Mallen review. There are also links to this site and the articles written for professionals - all of these mention a couple of years at least and the patient.info link speaks of patients with chronic illness who require much longer term maintenance doses.
I don't know if these help? Or refer him to the forums and tell him to come here and see you are by no means alone in still requiring pred for management after 2 1/2 years.
My rheumatologist said that he reckoned on average people needed pred for three and a half to four years, although some are on it for life. I assume this was a wet finger calculation based on his experience.
When I was first diagnosed December 2013 I popped along to see the GP and saw a locum. At the time I knew nothing about PMR and was chatting away to him about being off prednisolone within the year. The locum said to me that in his many years of work he had never had a patient who had been so lucky to have come of preds so quickly and I should prepare myself for about 3 years or so.
as Eileen has said, even the patient website states 2 years plus with some patients requiring maintenance doses for life.
all the best, christina
Certainly matches what I'd say.
Certainly matches what I'd say.
Hi Mrs. CJ,
in the 2+ years I have been on prednisone my attitude toward it has changed drastically. At the time of my initial prescription I googled "prednisone" and was really afraid of all the side affects. I was already being treated for high blood pressure and high cholesterol (thank you dear parents😕) and being monitored for glaucoma. The prednisone could/would make these worse. I did end up having to use drops for glaucoma. I really felt I needed to get off this horrible stuff as soon as I could.
Well 2+ Years later I am at 10mg because of flares and I have decided that prednisone is my master for however long it takes. I, like David, want some quality of life and do hope to reduce to a dose that doesn't cause so many side effects but I'm going to do it very, very slowly. I also hope, maybe selfishly, I am one of the lucky
ones that has the PMR go into remission in 3 or 4 years.
Doctors don't seem to get that we don't like taking this drug anymore than they Do. It is not a choice we have unless we want to end up in a wheelchair and in horrible pain. I don't like to wish ill on anyone but it would certainly help if some of these doctors could have PMR pain for a few days. Then they would be more understanding.
I hope you can work things out with your Dr. and that your PMR leaves you much sooner than later.
hugs, Diana🌸
I totally agree with Eileen I am just Two years on preds and my Doc keen for me to stop as have been on 1preds for about two months. Just had Esr blood test and see Rheumy this week so watch this space please .
Hi, Mrs CJ: Thanks for asking this. I may be facing the same problem myself. I wonder whether there is a systematic study of this somewhere.
My excellent, kind, always-listens-to-me GP just told me that he expects PMR patients to be off prednisone in 6 to 18 months. Even 4 months. Oh, dear.
When I was diagnosed at the end of Dec 2014, 15 mg did nothing and 20 mg was not totally effective. Only when I went on 60 mg for a GCA threat did the symptoms clear. Within about 10 days, I was back to 20 mg. Since then, with traveling, I have not been able to stay below 20 mg (with pain) and now am on 25 in hopes of getting ahead of this. So I don’t seem to be headed for a short, happy course off prednisone. Of course, my failure to respond may mean something else is going on, though all my symptoms have been textbook PMR.
My GP’s response to the Bristol method was that they do things differently in Europe. I guess you guys have stronger immune systems, so it takes more prednisone to resist your anti-immune response! The plan to reduce slowly and to avoid flare-ups makes so much sense to me that I was dismayed to think I might be pushed down an icy slope of out-of-control reductions!
My GP is going to confer with my rheumatologist and I hope we can keep the PMR under control.
In the end, though, we need DATA to convince doctors.
Hi Lodger, didn't get it😟
Good luck Beatrice!! Then you get to join "Club Zero"🏆
In the early days of my own diagnosis I read many texts - medical papers and textbooks. Almost without exception the textbooks were American or at least aimed at the international English-speaking medical field. Without exception they said PMR was a chronic illness that required long term corticosteroids.
Your GP is being rather silly in saying "they do it differently in Europe" - the disease is the same chronic presentation and is not cured by pred whther you use it in large doses or small ones. This is an extract from the Mayo Clinic article about it:
" Most people with polymyalgia rheumatica need to continue the corticosteroid treatment for one to two years....People who taper off the medication too quickly are more likely to have a relapse. Twenty percent or more of people with polymyalgia rheumatica will have a least one relapse when tapering off the corticosteroids. About 10 percent of people who successfully finish corticosteroid treatment will have a relapse within 10 years of the initial treatment."
You don't find anything much more USA than the Mayo.
This is from rarediseasedotorg:
"If these medications are not effective, low to moderate doses of corticosteroid drugs (e.g., prednisone) may be prescribed. Most affected individuals treated with corticosteroids experience rapid improvement within a few days. After the symptoms resolve, the dosage may then be lowered and a maintenance dose may be prescribed for a few months or up to several years."
No - your GP needs some education. PMR has no racist tendencies - except it is more common in Caucasians with Scandinavian genes. If that is the case - maybe the Europeans have worked out better how to deal with it 
Thanks. Interesting observations in this thread concerning the probable duration of PMR- which I know I have had for about 14 months. Perhaps longer, without being aware, untilI i had a very painful flare up as I reduced the pred I was taking for GCA, which hit me several months earlier. I was down to about 12 mg per day, having started at about 50 plus when the GCA came along. I had to go up quickly to over 40 to get things back under control and am now at about 14 mg per day and tapering down very slowly- even then I have a few rough days when I do so.
Noting the degree of uncertainty about the duration of PMR, is there any comparable educated guesswork as regards GCA? I am aware that some if the effects of the latter malady are probably permanent, such as damaged eyesight. Depressing, but one lives in hope. At 74, I have to recognise that even something "permanent" won't last forever.
The Mayo clinic and others do actually use the word "cure" about GCA. I'm not sure how they define that since in the past they have had no means of assessing whether the patient is completely disease-free or merely it is so quiescent that the patient is apparently healthy.
Some work done a year or so ago in the UK showed that there is still evidence of disease activity in the form of neutrophils, a variety of white blood cell, even after 6 months of high dose pred (defined as above 20mg) in both GCA (as defined by biopsy as temporal arteritis) and other large vessel vasculitides (LVV) even though the blood tests were "normal" and the patients had no symptoms.
I know at least one GCA patient who had a fairly uneventful course - once the rheumatologist had admitted it was GCA - reducing her pred over 2 years and returning to work. I know several others who had GCA, reduced over longer periods and have been pred-free for 3 or 4 years.
Of course there remains the lack of clarity about PMR/GCA/temporal arteritis. Far too many doctors remain of the conviction that GCA only manifests as temporal arteritis and that will be found by biopsy. Nothing could be further from the truth, as is now emerging from the modern imaging techniques which are available but even they do not always distinguish vasculitis due to giant cells from that due to other forms of inflammation, Then comes the question of where does PMR end and GCA begin - or are they actually the same thing? I think there are probably at least 2 varieties of pred-responsive PMR, one that is the same as GCA and if the giant cells are somewhere else you get the muscle pain and stiffness, it is just the luck (or otherwise) of the draw where they appear. And there is PMR that is due to another form of vasculitis and which also responds to prednisolone. And there are also other causes of PMR - after all, it must never be forgotten that PMR as we mean it is probably NEVER the disease itself, it is the manifestation of some underlying disease process. That may be what gives rise to the differences between required doses of pred, response to it and long term prognosis. In some ways a bit like cancer - cancer is not one disease, it is hundreds of different diseases but several will respond to the same treatment.
And another question that I think is important is the dosage. One patient who has had PMR twice has said they did better after a higher dose of pred was used to start with, the second time 15mg was the recommended starting dose and it was all much more difficult. In some sorts of PMR does a higher burst for a short time "clear things out" making way for a steady and straighforward reduction? As we keep saying, using a high dose from the outset may mask PMR as opposed to some other arthritis - but having decided on the basis of a 15mg dose response that this is very likely to be pred-responsive PMR, is there then a place for a short-lived high dose taper?
There have been no studies on best dose/reduction scheme as yet, it is all fairly empirical. However, there is something in the pipeline, also looking at the very slow taper concept. Certainly, anecdotally, it would appear that a taper that is slow and smoothed rather than dropping in bigger steps allows a lot of people to progress through their reduction with fewer flares and far less discomfort.
snapperblue
No we don't do things differently in Europe and your GP's response was wrong.
The American College of Rheumatology (ARC) and the European League Against Rheumatism, collaborate closely and have a sub committee on PMR and GCA. They are about to issue new guidelines on the treatment and diagnosis.
Use your search engine and type in Mayo Clinic USA PMR.
Thanks very much, Eileen and lodger! I'll look these up. My GP did his residency at Mayo, so selling him on its credibility should be not be difficult.
I also found a paper on long-term follow-up on PMR patients on steroids and (half of them) on methotrexate. In the conclusions, the authors (Cimmino et al) state "PMR is not a benign condition, as often reported, since one third of patients need steroid treatment for more than 6 years."
Another paper (a review of PMR treatment by Hernandez-Rodriguez et al 2009) says: "Slow prednisone dose tapering (<1 mg/mo) was associated with fewer relapses and more frequent glucocorticoid treatment cessation than faster tapering regimens." and
"...reductions below 10 mg/d should preferably follow a tapering rate of less than 1 mg/mo."
I found these through PubMed. Unfortunately, I have access only to the abstracts, not the full papers.
Great to hear about this collaborative effort Lodger. Do you have any idea how long it will be before the new guidelines are issued?
Sorry, I clean forgot how to send one. Asked Eileen and it has now been sent.