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I think I have PMR and I’m terrified

Posted by martyn @martyn, 4 days ago

I’m new on here because I guess I’m desperately seeking some comfort. I’m 58, active, keen cyclist doing 100 miles a week and live tennis. Then , five weeks ago I started the excruciating arm and shoulder pains. Did not even know what PMR was then and still didn’t really think I had PMR even when a friend told me to read up about it. I just thought it was some nerve issue.. anyway, long story short, went to rheumatologist today and he said 90% it’s PMR and will do the steroid test over next 4 days to get a confirmed diagnosis.
I’ve spent all night reading about this horrible condition and I’m filled with dread and a little despair. I have been very touched by reading some of the testimonies on this forum and I guess I’m just looking for some positive thoughts as I set out on this PMR journey that until a few weeks ago I never even imagined. I feel so stuck because I know the morning pain (which eases by afternoon but never goes away) is totally debilitating but I’m also very concerned about the side effects of the corticosteroids. Has anyone tried to battle it without taking the drugs? And if I have to take the steroids how bad are the side effects? I feel in a very dark place and feel as though I’ve suddenly gone from being a fit and young at heart 50 something to old age in a heartbeat :..
I’m sure once this settles in I’ll get to grips with it as I’ve managed some pretty tough times with a back surgery that went wrong but this feels so unknown and sinister. Apologies for being on the side of melodramatic but any positivity anyone whom is dealing with PMR can send my way would be very welcome… take care of yourselves
Martyn

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martyn | @martyn | 10 hours ago
In reply to @pmrnew "@martyn the symptoms seem all over the place. I refused pred (side effects) for 2.5 months...." + (show)
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@martyn the symptoms seem all over the place. I refused pred (side effects) for 2.5 months. Started what I thought was very high 30MG, for 1 week, then taper each week by 5MG. My pain was gone completely 1-2 hours after 1st dose, incredible. Tapered to 10MG, then more slowly to 2.5MG Since my total time on prednisone so far is March 20 to today the tapering has been easy, but PMR pain is definitely there. My last few weeks have been 2.5MG 5 days, 4, then 3 days a week and so on. My doc said 'trust the sediment test, down from 125 to 22, just about normal. I was scared but it is working. There is hope but it takes time.

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@pmrnew thanks for your reply . Great to hear another experience. I’m interested to know how your PMR was during the time you did not take the Pred? Was it up and down the pain levels or increasingly worse. I have things I still don’t really understand like why on some really bad mornings I managed to clamber on to my road bike, then rode for 2 hours and returned 60% better.. it’s so odd. I’m not disputing Pred is the route that is necessary and I no doubt will be on it soon but it seems there is grey area about other ways to improve the pain levels other than steroids. Hope im making sense ! Thanks and hope you’re doing well !

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kjoed53 | @kjoed53 | 9 hours ago
In reply to @martyn "@kjoed53 thanks for the reply. Interesting as you say that every tapering experience is very different...." + (show)
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@kjoed53 thanks for the reply. Interesting as you say that every tapering experience is very different. I’ve had no symptoms for 4 days on 20mg which was used as the test to see if I actually have PMR. So I’m hoping that I can maybe go to 15 as a starting point and see how I go with that. It’s so odd that there is so much vagueness from the medical profession about this condition. No real definitive cause or even whether it’s actually curable! Weirdly the rheumatologist didn’t ask my weight…

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@martyn
Thankfully, my doctor didn't ask my weight either, but I'm visibly big. No one knows the cause for sure, but I'm pretty sure mine was the result of covid. Viruses are recognized as a trigger for other issues. PMR is not curable but it does go into remission, with some people never experiencing a subsequent flare. Our symptoms can vary in levels of pain and duration. Our prednisone dosage can vary from 10mg to 40mg or higher. Our taper can vary in speed and success. My personal opinion is that PMR is a group of disorders that are similar but different, as opposed to a single malady. Listen to your body and taper wisely. Best of luck!

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pmrnew | @pmrnew | 8 hours ago
In reply to @martyn "@pmrnew thanks for your reply . Great to hear another experience. I’m interested to know how..." + (show)
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@pmrnew thanks for your reply . Great to hear another experience. I’m interested to know how your PMR was during the time you did not take the Pred? Was it up and down the pain levels or increasingly worse. I have things I still don’t really understand like why on some really bad mornings I managed to clamber on to my road bike, then rode for 2 hours and returned 60% better.. it’s so odd. I’m not disputing Pred is the route that is necessary and I no doubt will be on it soon but it seems there is grey area about other ways to improve the pain levels other than steroids. Hope im making sense ! Thanks and hope you’re doing well !

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@martyn Definitely odd!! In January 2026, when diagnosed I drastically changed diet, a bit of juicing no cheese (tough on a Dutch girl where cheese is a food group;-) no coffee and fasted 6 days. Then end of January fasted 31 days. Figured if it had to take corticosteroids, I would be ready. The pain and fatigue were always constant, more in morning less afternoons. I did not work out at all and lost a lot of muscle. Actually just looked at my diary. Have some notes on painkillers taken with berries during the fast. Pain ranging from 2-3 to 3-4 and sometimes 6-7 and other days pain med with small piece banana or a juice. Pain in shoulders and legs. Some days severe pain in morning then the rest of day nothing and turns into a great day. WOW, had forgotten about all that.
In March I traveled (grandkids ski trip) and capitulated on 20th to take Prednisone. The pain was quickly gone (an hour) and I got up on the mountain to everyone's surprise. Very weak, but probably more due to fasting. That said, I feel it helped, way lower BP, lower cholesterol and weight to give my body a fighting chance against PMR and prednisone. Good luck, it is a bumpy ride.

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kevinburdick1 | @kevinburdick1 | 5 hours ago

I am just a bit ahead of you. Hang in there. I am still adjusting. Pain and stiffness manageable at this point. But every day is different. There are times during the day that I even forget about the situation for a short time. There are adjustments which I am working through still but I am not as scared as I was.

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