PMR 6 years another flare?
Posted , 7 users are following.
Hi everyone, I'd welcome your thoughts. I was diagnosed with PMR nearly 6 years ago at the age of 55 reduced slowly to 3mg pred and 2 years ago had a flare up from which I've reduced to 4mg, I must admit that work was very busy and the thought of reducing further and starting with the high level of pain again kept me at 4mg. I have lived with an underlying stiffness and accepted it as part of what life is like. I have lost 21/2 stone I retired last September and was hoping I could start to reduce following a 3 month holiday in Australia however since I've returned home I'm finding I am waking on a morning with more aches and stiffness in different places from previous stiffness , the stiffness is in the tops of both arms from the elbow rather than the neck and shoulders and although some increased stiffness in my hips more in the knees -could it be PMR flare again?
I have been hoping that the PMR would burn itself out and I could one day become free of stiffness, are there people out there that have to continue with pred indefinitely for a long number of years?
I'm also interested in genetic links in family and wonder if there is any connection, my sister has Cushins disease which has resulted in removal of her adrenal gland, both Cushins and PMR appear to have some links however manifest themselves in different ways.
Thoughts would be apreciated prior to talking to my GP.
0 likes, 6 replies
Nefret Lesley_M
Posted
At such low doses there should not be any discernable side effects as it is a similar amount to the body's natural cortisol level.
Prednisolone can cause steroid induced Cushing's so I would be keeping a close watch on that.
Genetics - no known family members at all with anything autoimmune whatsoever. My mother had OA but only in her hands. I've had a new hip and a new knee in 15 months, although to be fair they would probably have occurred anyway due to a minor deformity which caused me to walk unevenly.
constance.de Lesley_M
Posted
I have had PMR for nearly five years now and although it is much better I still have difficulty when I reach 5 mg. I am keeping that as my basic treatment for the next few weeks, then I'll try once more to reduce.
Have you stiffness and pain in other joints? Could OA be a possibility? It seems to me once PMR seems to be decreasing OA creeps in. Of course we are all a little older now too!😡
All the best!
andypolly Lesley_M
Posted
Charlieschoc Lesley_M
Posted
I can however tell you my professor rhumy does believe in a genetic link.
My mother also has PMR.
I think more research is needed on this though??
As I know other rhumys disagree?
Xx
Anhaga Lesley_M
Posted
EileenH Lesley_M
Posted
I've had PMR for 12 years, I've been on pred for the last 7. It wasn't recognised for the first 5+ years and it was me who eventually worked out what it was after a really severe flare! I had been down to 5mg for a couple of years although I couldn't get lower without awful fatigue. I've recently had another flare - back to 15mg and on my way down again. It is thought that about a quarter of us need a low dose of pred for a very long time, sometimes for life. In some cases it may be because the adrenal glands don't start to function again, in others it may be because there is simply still autoimmune activity causing the symptoms - but one isn't causing the other.
There are no real links between Cushings disease and PMR.
Cushing's disease is when your body produces far too much of the natural corticosteroid, cortisol. As a result you put on weight in specific places and develop various other symptoms that are due to the excess cortisol circulating in your body. There are a few reasons for it - some are due to imbalances of various hormones due to malfunctioning of various organs (pituitary, adrenals, hypothalamus) and one is due to a tumour on the adrenal glands which produces cortisol. All these are pathological states and need to be investigated.
When you are on pred for PMR your body is subject to an excess of a corticosteroid - but it is due to the pred you are taking, not to something in your body not functioning properly or to a pathological condition that is producing too much. You know where the excess is coming from but the effect is the same - and we call it the side effects of pred. Stop taking the pred and the problems will generally resolve slowly. The things that are similar to Cushing's disease are not due to PMR, they are due to the treatment.
There is a genetic aspect to PMR in that people with Scandinavian genes seem to be more likely to develop it. But it is probably more due to a whole range of things that impact on your immune system - and eventually one is one too many and the immune system goes haywire. There is no one thing that you can say is common to everyone - and some of the things blamed aren't to blame in everyone. I had never had a flu jab for example. There are environmental, genealogical, physical, psychological aspects. No common link has been identified yet.
Maybe the warmth in Australia helped the PMR - and the chill and damp in the UK isn't helping? But it does sound like a flare.