Off steroids for PMR in just a year??
Posted , 12 users are following.
I have just heard of a male friend of my friend who was diagnosed with PMR a year ago and was put on 15mg of pred.He became pain free and was able to continue to live a normal life and play golf etc. He has now just come off pred after reducing at a brisk steady pace to zero. He is back feeling absolutely normal.
I find this absolutely incredible and wonder if he had it very mildly or if he even shouldn't have been put on steroids Eileen? Surely tapering down in one year must be unusual??
My husband's stiff painful legs in April which then went into his hands, fingers and upper arms were treated by the GP with physio and ibuprofen as he was totally against pred unless he absolutely had to take it. His ESR was normal and his CRP was 19 which is now normal.He is down to one 200mg ibuprofen per day and his legs are pain free.To me, his symptoms smacked of PMR but obviously it is something else.Life is one big mystery.
0 likes, 31 replies
EileenH diana21296
Posted
I am convinced there are at least 4 different versions of PMR - and it should be renamed as pred-responsive polymyalgic syndrome (at the very least). It isn't a single disorder but occupies a place on a very wide spectrum of GCA-related vasculitis. If I have written "everyone is different" once I have written it dozens of times. Nothing changes...
Most men do experience PMR differently from most women - usually shorter and mostly easier. There are theories about that of course. But above all - PMR is only a symptom of an underlying problem and there are quite a few but many doctors seem blissfully unaware of that.
One version I think is a reactive form - a viral infection triggers the symptoms but once the viral infection is gone, the symptoms resolve. How may actually have that? At that stage we are mostly on a taper and miss it - are they the 2-year people?
Then there is the version that cycles - patients get off pred and then relapse a few months later. The people who get off pred quickly are felt to be at a higher risk of relapse. Some of those are 2 year people too.
Then there is the 5year plus or minus version - covers a load of patients. And the rest of your life version - or the sort you don't have time to get to zero pred before it reappears. Like me.
And there must be stuff that falls inbetween - maybe. And the misdiagnosed...
ptolemy diana21296
Posted
If your husband is finding Ibuprofen is working for him, it is unlikely what it is helping is PMR it is something else, as you say.
kathy61958 diana21296
Posted
Hi, Diana
i was diagnosed with PMR 16 months ago. I was up to 80mg's of prednisone at one point. I'd taper down and my symptoms would return. back up I'd go. I did the yo-yo dance for almost a year. Since most people suffer with PMR anywhere from 5 to 7 years, I was quite despondent. Three months ago I started Actemra injections and was able to taper much faster from the prednisone. Today marks 5 days of being completely off prednisone. So far, so good! I am optimistic, but remain guarded. Many people have a flare and go right back on the prednisone. It could happen to me at any time and it could happen to the friend you spoke of. Hopefully, he and I will remain symptom free.
EileenH kathy61958
Posted
If you needed 80mg at any point - whatever it was, it wasn't the PMR we discuss here! Response to a low dose of pred is one of the criteria, I wonder what it was?
kathy61958 EileenH
Posted
80mg's was absolutely in response to my PMR and GCA. it was a pulse dose for 3 days because my vision was dark in my left eye and my neck & shoulders were immobile. it did the trick and I was reduced to 40mg's, then 20, then 15, then back up to 20, then down, then up..etc, etc
EileenH kathy61958
Posted
That's fair enough - you hadn't mentioned GCA, just PMR.
mary19068 diana21296
Posted
Hi diana21296
It is possible to taper from 15mg prednisolone in a year. I am living proof of that, but did experienced post-pred pain and withdrawal symptoms, but it all faded out eventually.
I do believe i did not have PMR in the first place. I am convinced that anaesthetic that i had for a foot op did something to my muscles as muscles are paralyzed under anaesthetic. The pain in my muscles showed itself 3-4 months after my foot op. So i have come to the conclusion, going by my own experience, that a percentage of those diagnosed with PMR,,do not have PMR.
GCA diagnosis is a different matter altogether because it is a part of PMR.....
EileenH mary19068
Posted
There is a reaction to anaesthetic - but it usually occurs immediately. Again - I wonder what it was?
mary19068 EileenH
Posted
Hi EileenH
I think inflammation showed up in my ESR CRP blood tests because i had not long gotten over flu and sinus infection and there was still some inflammation hanging around. My levels were not that high either. Also, i think the pain in my shoulders and hips were due to using crutches and putting all my weight on one foot may have affected my hips after my op who knows? I suppose it will forevermore remain a mystery🤔🤔🙄...
EileenH mary19068
Posted
Very likely!!!
jean_b EileenH
Posted
hi eileen can i jump in here with a thought as regards what could trigger PMR .i had been on HRT for 15 years after having full hysterectomy (womb and ovouries taken ) at 50 years old.then at 65 my doctor kept saying i have to come off HRT i kept telling her i had no overies but she still insisted .I often wish i had not given in because 3months later PMR struck me and iam now 73 .eight years in PMR still.I always remember my rheumy saying "why did she take you off HRT after so long as it was keeping your bones a d musckes strong and would have been a shock o your system" but what was i supposed to do when my doctor said i was putting myself at risk of cancer and other things by staying on HRT. Just a thought that bothers me but i suppose ill never know .maybe someone here might have had same happen to them .best wishes to all .
EileenH jean_b
Posted
"maybe someone here might have had same happen to them"
Me. I had something that was probably what is now known as ME when I was in my late 20s which took a long time to really go away but then the awful fatigue was back in my late 30s together with sweats. My then gynaecologist put me on HRT thinking it was perimenopause - and I was so much better. Eventually there was one scare story too many and I thought I perhaps should give up after about 13 years. And it wasn't that much later that the first signs of PMR appeared - stiff shoulders first of all and then it crept up. It was 5 years before I got pred which provided a miracle in under 6 hours - and 6 months later that long awaited menopause finally happened! I, too, regret giving up the HRT - I did still have the choice.
diana21296 EileenH
Posted
I have been on a small dose of HRT gel for 25 years. Tried to give it up when I retired but couldn't stand the hot flushes, sweating etc. I decided that quality of life was important so decided to stay on it for life and safer as I had had a hysterectomy and ovaries removed.And now hooked on pred so feel like a total addict!
jean_b EileenH
Posted
hi eileen and diana.well three different scenarios here with a connection ?so maybe a trigger here ! but hay ho that is all it is and nothing can be done about it. whats done us done so onwards we go in the hope of remission.ICan honestly say i regret letting gp pursuade me but she was following government guidlines at the time and then later government had an about turn on HRT But too late for us .wish you all well.
EileenH jean_b
Posted
There is almost certainly no single trigger - all that have been suggested thus far have been discounted as they aren't a factor for all patients. It is an accumulation of various factors which all have an impact on the immune system - and together with a genetic predisposition eventually a straw breaks the camel's back and the immune system goes haywire. So it will mean that the flu shot, or flu itself, or an accident, or surgery or emotional stress is perceived by various people to have triggered "their" PMR/GCA. It doesn't mean that is what "did it".