I was diagnosed with PMR just under 2 years ago and luckily managed to reduce my pred to 3 mg in a year and a half. Unfortunately my CRP and ESR have shot up so have increased the dose to 4. I have a bit of pain in my hips and buttocks ( the pain seems to move around)but nowhere else. As I’m concerned at the side effects such as osteoporosis of pred I want to get off them ASAP . I’m curious to know if the pred simply suppresses the inflammation rather than curing it and is osteoporosis a bigger risk than inflammation if I continue to take pred?
Does pred cure or simply suppress symptoms? - PMRGCAuk
The pred cures nothing - it is managing the daily dose of new inflammation to allow you a decent quality of life until the underlying autoimmune disorder burns out and goes into remission. The median time for that is 5.9 years - anything from 2 years up is possible. Unmanaged inflammation does damage - and unmanaged PMR is felt to be more likely to progress to GCA when there is little choice but high dose pred to prevent loss of vision. It sounds as if you have overshot the dose you were looking for: the lowest dose that gives the same result as the starting dose did. While 4mg may be enough to hold the symptoms at bay you might be better having a few days at a higher dose just to clear out the new accumulation that sent the markers up. There is no merit allowing a bit of pain just to be at 1mg lower - the inflammation will do more damage than the 1mg of pred.
OTOH, the low dose of pred you have already achieved is doing little damage. It MAY lead to a higher risk of developing cataracts - but probably only sooner than you would have done without pred. A recent study has shown that low dose pred doesn't lead to the side effects most doctors will tell you are inevitable:
As a personal example: I have been on pred for 9 years (I have had PMR symptoms for 14). After over 7 years on doses above 9mg for the majority of the time my bone density was barely changed from the baseline level when I first started pred. I had no sign of cataracts or diabetes (although I do eat a low carb diet). I had gained weight with pred and lost it all again with the low carb pattern of eating. There is no evidence I have been on long term pred.
Thankyou pmr pro after reading your answer I had a light bulb moment why am I putting up with all this shoulder and arm pain because I have a rhumb app in Oct and she wants me to reduce to nil preds she doesn’t have the pain, she wants me hooked on pain killers which have there own evil side effects, so excuse me I’m off to get a few more preds then me and my gorgeous g randson are going to hit the park running ,,,,,😅😅😅😅😅
Thanks for this comprehensive reply. It is very good to understand that it is about managing the inflammation rather than curing the disease. With this in mind, we can have a meaningful exchange with doctors rather than the push to lower pred dose no matter what. Balance is key (and in that I include the low carb diet). Thanks for all your really helpful posts.