Greetings to the nice people in this forum. I read a lot of helpful posts and would like to share my experiences and ask for advices.
I am a 56 years female living in Canada, new to this forum. In May 2017 I was diagnosed as PMR because of high ESR (46). The first 25 mg pred removed the pains from my legs and shoulders in just a few hours. On the way of reducing dose, ESR and CRP were mostly in normal ranges with occasional over threshold. While reaching 12.5 mg daily I had to go back to 15 mg because of the serious pain. My weight is gradually decreasing, even after taking pred (109 lb down to 105 lb). Now I am down to 8 mg daily, hesitating if I have to go back to a higher dose because the pains seem to be getting back gradually.
I can experience bother-some pains with perfectly normal ESR/CRP. Is this common with PMR patients? What is the controlling factor for the tapering down dose, blood test results or my own feeling? When I experience an increasing pain (bearable) should I increase dose right away, or hold on to the same dose as long as I can?
Thanks for your help.
Symptoms always trump blood markers - up to 20% of patients never have raised blood values at all and a lot of people find they don't go up when they are still on pred even when the symptoms return. No-one knows why, it is just so.
There is no virtue in taking too little pred to manage your symptoms - you need to have a benefit to outweight any downsides of pred, which are far fewer at this sort of dose than a lot of doctors think! Nor is it a good idea to try to tough it out - all that happens then is that the dripping tap of inflammation builds up until you have a good-going flare and need a lot higher dose to get it under control. The pred hasn't cured anything - it is just manageing the daily dose of new inflammation so you have fewer symptoms until the underlying autoimmune cause of the symptoms we call PMR burns out and goes into remission.
Hi PMRpro, thank you very much for your reply. You answered the question that my specialist didn't answer. I will pay more attention to the pain instead of the blood test results.
By the way, I read your post about the almost non-existing side effect of pred. It really eased my mind. I decide to take enough pred as long as it needs to get my inflammation under control. Thanks.