I think I have PMR and I’m terrified

@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 !

@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!

@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.

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.

I felt the extreme and debilitating PMR pain in January 2025 but wasn’t diagnosed until May that year. I thought I had hurt my lower back somehow. I was prescribed 15 mgs of Prednisone and tapered slowly for the next year. The Prednisone kept the pain at bay and I functioned normally except that I was tired every afternoon - and because of that malaise, was not able to exercise regularly— and did add 15 lbs. It’s now August 2026 and I finally feel myself again! There is stiffness if I sit or lie for long periods of time but it goes away in about 5 or 10 minutes. I am exercising again, losing that weight gain, and feeling clear-headed. I guess this is remission, but I wanted to give hope to those just learning about this condition. It was a sleepy and lonely year - I call it my “lost year” - but now that I am feeling better, I want to help others get through it. I am 66 years old.

@dadcue I agree 100%. I was on prednisone long term and I developed uncontrollable: swelling in my legs, high blood pressure, and weight gain. I switched to Kevzara and I refuse to even consider taking prednisone. From my research I learned that prednisone is meant for short term treatment not for long term treatment.

I have PMR and neuropathy. When I get a flare up I’m bed ridden and go into the hospital because along with the excruciating pain I lose the use of my legs. I have not had a flare up since June of 2023. as of July of 2025 I am now able to ride my trike (trike because my neuropathy causes balance issues).

When I first develop PMR at 60 and the doctors were unable to diagnose what was crippling me, I too felt real despair. I went through four weeks of excruciating pain before a rheumatologist gave my doctor the advice to put me on prednisone for the weekend. As you can imagine everything cleared up and I felt euphoria. Then started the year long taper until I was free of pain completely. I’m 70 now and have developed it again. That was in November and started at 20 mg of prednisone and we gain methotrexate injections. I listen to the rheumatologist, but in hindsight, I wish I’d have objected to the methotrexate. However, we are now at 3 mg of prednisone and as you mentioned, the pain never quite goes away at this level. But my history indicates that before Christmas, I should be free of the steroid and hopefully the methotrexate. I have no doubt I will return to normal and hopefully not have a returned in my lifetime. For your information I have had no side effects to either bout so far. But I am active five days a week in sports and my advice to you is work through the pain and keep playing. Good luck.

@kjoed53 sorry for such a late reply but was overwhelmed with amazing messages. Your support means a great deal and this week is ending so much better than it started .
Thanks 🙏

@jeff97 @dadcue my rheumatologist is very positive and made me reassured today. His plan is 15mg for one week, the. 12.5mg for one week and then down to 10 for one month and then hopefully take it down 1mg every 2 weeks or so. Does that seem sensible to you ? I asked about the adrenal gland today and he said there’s no hard and fast rule about when that fully fires up again but can already start even on a low dose of Pred. He also advised that riding my the bike would be beneficial within reason and to stay as active as I feel comfortable with. Staying optimistic and realistic !! Thanks for connecting