If you are struggling with a doctor who is desperate to get you off pred and you are at below 10mg or so - ask them to read and view these links.
With thanks to pipistrelle and Keyes who originally posted these links. This is so I can find them easily!
PS - apart from the side effects the most important thing is the fact that pred can last for 6 years - Hallelujah!!!! I've only been saying this for the last 7 years or so!
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PMRpro
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PMR can last for 6 years, but the Pred head last longer🤨😉 it would appear! Mine has I know that for sure.
The only significant side effect I had at much higher doses was steroid induced cataracts, but who’s to say I wouldn’t have needed them replaced anyway.
Good to see some sensible reactions to steroids at long last - hopefully it will continue.
PMR never goes away for some people, DorsetLady. I have had many flares, the most recent in July last year after 9 year of PMR. December Synacthen test found adrenal suppression, so am on minimum 5 mg Pred for life. No doubt another flare will mean an increase in dose and tapering to 5 mg. So far, GCA has not hit me, for which I am so relieved, and hopefully it wont.
5% of patients with PMR have it for life - after 14 years I assume I am one of those! But for about 75% it does go into remission on its own in up to about 6 years. Unfortunately we are fighting an impression amongst many doctors that PMR lasts 2 years and if it hasn't gone away in that time, it can't be PMR. In fact, one elderly retired rheumy joined one of the forums obviously thinking we would all fall down in the face of his great knowledge. He announced that if it hadn't gone in 2 years it was, "by definition" not PMR. You should have seen the response!
Hopefully even if HE doesn't learn from this, many others will.
I’m well aware some people have PMR for a long time, and if you read my replies you’ll know that I’m always wittering on about doctors and their “2years” rubbish!
Actually I was quoting what an American doctor said in one of the links, and also taking the mickey out of PMRpro who quotes “that Pred can last for 6 years” - obviously a mis-type!
My sense of humour has obviously got worse since I’ve been in NZ🤦🏻♀️
So for three years I had PMR. Then six months later GCA reared it’s ugly head. I haven’t read the article yet but I can honestly say being at 40 and 30 and 20mg of prednisone. I have a lot of side effects but nothing like being at 7 And my arthritis is horrible. Pain is unbearable every day. And I live with such mixed emotions. Happy the actemra has brought my numbers down but it has allowed the arthritis to take hold. Now I will read the article. Thank you pro😂
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