I had PMR from July 2010 until May 2013 when I stopped prednisone and had no symptoms. I was PMR free for three years then it returned as bad as ever in 2017. On Prednisone again but I am already down to 5 MG. I hope I do not have to be on prednisone again for three years. I would love to hear the experiences of others that had PMR return.
I only know a few people and only one is on this forum and she doesn't stop by that often I don't think. She may see your post though.
However, the two who had a few years between episodes both say the two lots were totally different in every way even the pred journey. Another lady had only been off pred for a few months when the symptoms came back - and she doesn't know if it is different but SHE is different! This time she takes the amount of pred she needs and doesn't care about trying to get as low as possible on the grounds you only live once and she's going to enjoy herself!
Hi Daniel,
Sorry to hear of your PMR symptoms returning after you've been doing so well! I guess the only consolation is that you can easily recognise your symptoms and take quick action to get some relief. I started with PMR around Jan 2014 and came off prednisolone ( only tolerated 8 months of treatment )around This time last year. I wouldn't say that I am as active as I was before starting with PMR and progress on my exercise tolerance has been slow....particularly after stopping prednisolone but Im now at 10,000 steps daily and managing to do my usual daily chores etc without pain. My muscles seem to take longer to recover after a long walk but the difference between how I am now and how I was then is remarkable, the difference of course being that a couple of paracetamol or ibuprofen control those pains if I need them which was never effective with PMR pain.
Funnily enough I had my bloods taken at my GP surgery yesterday ....just helps to keep an eye on things as I still consider that I have PMR.......probably because rheumatologist I was seeing has given me instructions on what to do in my case should PMR pain reoccur.
Hope you manage to get your pain under control soon take care x
Any idea what caused it in the first place ? Or in the second place?....I believe a lack of sleep during a stress filled period caused mine....bit of a mystery 
In my case the PMR symptoms were the same and the relief was fast and pain free. Once diagnosed as PMR again, one doctor told me you can only get it once, I went to another doctor. Started me on 60 mg prednisone and the symptoms were almost 100 % gone within a few hours. In one month I have moved down to 5 mg. In a week I will stop prednisone. I am taking Tumeric and Bromelin and hope that will fight the inflamation when the prednisone is gone.
Anyone with PMR who is put on 60mg is likely to be pain-free in hours! I was pretty well pain-free in 6 hours on 15mg. But it doesn't mean it is gone, it means the symptoms have gone. That is all the pred does, manages the symptoms. I do hope the symptoms do not return when the pred is stopped - but I'm doubtful if it really is PMR.
I despair sometimes at the things some doctors say - it is not uncommon to have PMR symptoms, get off pred and have another episode at a later date. In one sense he is right, you only get the autoimmune disease once, but it never goes away, the propensity to have a flare remains, probably for life. Just like the majority of autoimmune disorders.
Is it safe to stop pred suddenly after a month or five weeks?
Hi, This post has me a bit scared. I had PMR from April 2014 until December 2016 (about 2 years 8 months). I have been off the Prednisone since December 25th after tapering very slowly and so far after almost 3 months I have had no PMR pain and have been doing my usual workouts. You and I were diagnosed about the same time and it sounds like you have been off the Prednisone for quite awhile. If you don't mind me asking how long have you been off the Pred? I hear there is a 0 Prednisone group somewhere to support us.
Thanks 😊
I took prednisone from November 2011 until May of 2013. When I stopped the prednisone I was 100% free of PMR symptoms. In November of 2016
I got PMR again and once again the rheumatologists misdiagnosed it.
In November 2016 had shoulder pain and other symptoms. Got shoulder x-rays and was diagnosed with Osteoarthritis. Got cortezone injection in each shoulder pain was aleviated for three weeks then returned. On December 6 had second injection with no relief. December 15, 2016 consult submitted
for physical Theraphy. Symptons get worse and were similar to PMR of 2011.
Sever shoulder pain
restricted motion
hand pain
fatigue
leg pain and weakness
For second opinion went to another doctor. She had my blood tested
Most were normal except the following:
Sodium Serum 145 High end of range
Rheumatoid Arthritis <10 Below range Negative
Vitamin D 18 Low
CCP Antibodies (PMR) 126 Really strong positive
Very strong possibility that PMR has returned. Doctor put me on pednisone step down therapy. The first 60 mg pill made all the symptoms go away.
The doctor that originally diagnosed pmr told me this time you can not get it again. Wrong.
jean50664,
I have never been told by any doctor, the cause of PMR. I do not believe there is a known cause.
I will find out soon.
Fair enough....but something must cause it.... more research pls
Not a group to support you really - just a thread of posts from people who HAVE got off pred to encourage you! They rarely come by the forum now - because they are busy getting on with life!
It isn't particularly common for people to have a second episode, no more common than peole having it long term, like me. But it happens - no getting away from that I'm afraid.
It's like any autoimmune disease, no-one really knows the mechanisms of how the symptoms are caused. Until you know how that happens it's a bit difficult to develop a cure. And since the most likely reasons for the development of the autoimmune bit are a combination of wide-ranging things (environmental, infections, stress of all sorts upsetting the immune system plus an element of genetic susceptibiliy) it is next to impossible to say which ir how, there are too many variables at play.
But if the human race didn't pollute its nest so much it would probably help!
A month or so is probably OK if the pred dose wasn't very high the entire time. My daughter uses pred for exaccerbations of asthma, usually 40mg to start and she stops each time after 5 or 6 weeks.
jean50664,
In my experience none of the doctors had a clue what causes Polymyalgsia Rheumatica. I also found that blood tests do not seem to be a good indicator. You would think that having been through the whole experience once the second time I would know what it was. The problem is the symptoms are all over the place and other things cause similiar symptoms. It was not until the symptoms were extreme and almost exactly like the first time 1Extreme shoulder pain 2 Hip pain 3Extremely tired all the time 4Muscle werakness 5Trouble sleeping and getting comfortable
At that point the light bulb went off -"I have pmr again"