Off steroids for PMR in just a year??

There is a guy in my village who told me that he took 16 months to get off pred with no problems. I then met his wife and discovered it was actually three and a half years and not that easy!

There's a lady of 86 in my village who says she had PMR/GCA over 30 years ago. she made a complete recovery but has no idea how long she was on pred. How strange..the date I was diagnosed after a day in A&E will be forever written on my brain in stone. And she is completely with it and drives from Southampton to London on M25 regularly!! Inspirational for sure.

I also met a lady working in Oxfam who said she had had PMR but she got over it with no treatment. I told her she obviously hadn't had PMR whatever her dr had told her and we parter you n frosty terms. Haha!

I think some people get very macho about these things!!

NOT ME!!

I'm a pain weenie from hell! When I was first diagnosed, I was ready to pull out my hair. The pain was horrific. Within hours of my first dose of prednisone, I was so much better. Now that I've been off of it for 6 days, I am testing my shoulders & hips constantly. At the first sign of PMR symptoms, I'll be swallowing prednisone!

I've had kidney surgery, back surgery and knee surgery. None of them hurt like PMR & GCA. I'm no cowboy!

I agree PMR pain is really excruciating. I still lie in bed and think about the horrific pain.

Totally unforgettable if I live to 100!

Suppose it depends how long she had had it - because PMR IS a self-limiting condition which means it will eventually burn out and go into remission for 95% of patients whether they take pred or not. There is no treatment and all pred does is manage the symptoms to allow a better quality of life in the meantime - which since there is no way of predicting how long it will last makes life a lot more pleasant.

It lasts up to 2 years for fewer than 1 in 5 - but the median duration is just under 6 years and I know of people on pred for 11 years who did manage to get off eventually. I wasn't diagnosed for 5 years so had no choice about managing without pred - but it is still here after nearly 14 years (or is it 15? I've lost count!) and has never gone away in that time.

I agree with ptolemy - there are people who think it is very virtuous to suffer pain and disability and are seriously macho about it. And anyone who claims PMR isn't too bad without pred didn't have it as badly as or for as long as many people on the forums.

Hi EileenH

Is PMR pain really severe?..because if it is i definitely didn't have PMR!🤔..the pain i had was likened to aches in my shoulders and hips. I had what i would call severe pain with post pred pain Urrggh 😲....now that was pain in the true sense of the word!!

I suppose how you define severe - I lived with it for 5 years and there were days I could barely move but the worst aspect was that it was unrelenting however bad it was and it was so draining. My hands and feet and hips were the worst, my shoulders were stiff more than painful. But standing from sitting made me feel really faint with the pain for a moment or two, from feet and hips when I put weight on them, and it took a few minutes to straighten up and be able to walk. My hands were tenosynovitis and there were sharp knife-like pains in the joints if I moved them the wrong way. I had 6 weeks on a 15/10/5 taper and had almost no pain the entire time. Within 6 hours of missing the first 5mg tablet I was in bed, in tears with the pain. I think that was when I realised how much pain I had been in - the contrast made it obvious. But it isn't severe for everyone - that is part of the problem I suppose, the different versions.

Hi EileenH

Wow! That made me cringe reading that!

😣.

My pain was likened to doing to much exercise, muscle aches, but nothing really to get hype about. I suppose, again, we are all different in that we have different endurances of pain and pain depths. My muscles aches could be excrutiating to someone else......🤔🙄...

wow! reading your comment brought back my original symptoms. I agree, it was horrific. the back of my thighs felt like I'd been working out at the gym for 12 hours straight. my neck & shoulders felt like I'd just played a professional football game.

I do hope the end of your symptoms are near. Whoever called these "The golden years" must have been 25!

"I do hope the end of your symptoms are near. "

I'd love to think so - but after 14 years I won't hold my breath!!!! The most painful bit was my quads when I tried to use the cross-trainer at the gym! I knew what to avoid though - and kept the pain level to a more average sort of level. Now I get the occasional episode of really excruciating low back pain and that is associated with the PMR. I know how to manage that too - but waits to see doctors to be able to have insurance-paid physio/massage catch me out. But I manage it well enough - I will not compromise on my dose of pred. I need what I need - not just for the PMR but also for atrial fibrillation it seems! But life is good most of the time 😃

it's not quite as common in men either!....