I have been living with PMR for 3 years - started on 15mg of pred now on 3mg. I have had a few what I take to be flare-ups and have had to increase pred in response. The return of symptoms' was the indicator of the relapses and each time I reacted quickly to increase the pred.
I know think that I can live with the level of pain and stiffness that I am experiencing now but I am worried that the current level of inflammation may be causing damage to my muscles.
I am 73 and have an active life style which includes long, fairly brisk walks with a very energetic (3.3 year old) Border Collie.
I am loathed to increase the pred but will do if by putting up with some aches and pains, I am damaging muscle tissue.
Any thoughts will be appreciated.
Brian
Written by
Wortley
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I don't know the professional answer to that but it is something I have been thinking about again recently while reading A Silent Fire: The story of inflammation and disease, by Shilpa Ravella.
I have always held that whatever the downsides of pred, it isn't as simple as pred bad, no pred good. Uncontrolled even low level inflammation in the body is causing ongoing damage to many tissues and leaving us at risk of other conditions ranging from relatively innocuous to cancers.
I have had PMR for a very long time, without pred I would have had a very unpleasant life, pretty disabled and in considerable pain. There is no concrete evidence the pred has done significant damage, at the last dexascan my bone density was little changed and that was with no bisphosphonates, no sign of steroid induced diabetes, I gained weight with PMR and immobility, I lost weight while taking pred. I am overweight - but I always have been. Now there is possible deterioration of a lumbar vertebra - maybe due to pred but I am also nearly 72 so maybe it is natural progression. It will be discussed by my rheumy with the radiographers next week, I have a dexascan appointment in early February. We'll see. If it is decided I need Prolia or the like, I'm happy providing there is evidence and it is not "just in case".
I too am a great supporter of pred. I will look out the work by Shilpa Ravella - sounds like an interesting read. I will continue to adjust the pred accordingly - thank you very much for your response and thoughts.
My first thought is why worry about pred when you are so low and three years in. Under 5 is a "non toxic" dose - which I believe means it's no longer doing major harm like osteo or diabetes etc. Even going up a bit for a while shouldn't hurt. Coasting slowly downwards for another year or two to keep quality of life and dog happy seems reasonable.
On the harm issue, when I had a (hopefully brief) blast of PMR after two years of GCA I went up from 3mg to the usual plus five flare but 8 did not control the aches so I went to 5 and put up with them. They lasted three months before I could reduce to 4.5. Anyway, the point is that consultant Rod Hughes was not concerned about muscle damage and said it was fine if I stayed with a level of ache I could cope with, so long as it was not getting worse. However I suppose there is a difference in that I did not have a couple of years of PMR under my belt.
So pay your money and take your choice, but in your situation I'd keep on the pred and a slow reduction. Particularly if your HBa1c is ok, but even if raised, that can be reduced by diet. And it would be good to have a DEXA to find a baseline.
You stated, “I am 73 and have an active life style which includes long, fairly brisk walks with a very energetic (3.3 year old) Border Collie.”
Others have addressed your question, but have you considered reducing the intensity and length of these walks? For the Collie’s well being walking them twice a day for 45 min each is recommended. However, considering you have PMR it may be better doing three 30 min walks at a slower pace. Border Collies are very intelligent and beautiful dogs, unfortunately they are also probably the worse breed to own when having PMR. But, we love what we love. My weakness are Dobies which are almost as bad with regards to activity level.
PS: Find some sheep and whistle train your dog, then you can sit back while s/he gets plenty of mental / physical exercise moving the sheep around!😆
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