I think I have PMR and I’m terrified

@martyn
Your body will let you know how sensible it is. If you have initial increase in pain at a decrease, give it a few days to see if it subsides. If it does, then you're okay. If it doesn't, then listen to your body.

@kjoed53 thanks for that great advice yeah .. I guess it’s good to avoid knee jerk reactions.

@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

@martyn
Your body will let you know how sensible it is. If you have initial increase in pain at a decrease, give it a few days to see if it subsides. If it does, then you're okay. If it doesn't, then listen to your body.

@kjoed53 @martyn

“ Your body will let you know how sensible it is. If you have initial increase in pain at a decrease, give it a few days to see if it subsides. If it does, then you're okay. If it doesn't, then listen to your body.”

Excellent advice. That’s really all we can do. You’ll experiment with yourself.
I’m an old science teacher so that’s why I say that.

@martyn I like that plan of tapering. If I had to do it all over, I would have started with a bare minimum (certainly not 40mg, more like 15mg/day) and added to it if necessary rather than start with a lot and guess taper down.
Keep us up to date on you progress. It will be helpful.

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.

@stonewheel

None of what follows applies to PMR. I tried every taper trick that I knew attempting to taper off prednisone. It still took me 12 years after PMR was diagnosed before I was successful when a biologic was tried.
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I had a lot of practice treating flares of uveitis. For the first couple of flares, my ophthalmologist started with low dose and I worked my way up --- sometimes up to 100 mg. I quickly learned that 100 mg was my personal absolute limit and I informed my ophthalmologist I couldn't take any more than 100 mg. Fortunately 100 mg "got on top of uveitis flares" and I could start to taper lower.

Knowing that the above experience wasn't ideal, my ophthalmologist decided to try a different tactic for susequent uveitis flares. He wanted to "hit it hard" right from the start and Istarted with 60 mg. I was instructed to increase my dose if needed but 60 mg usually worked and I could taper lower. The problem I encountered was the progress made on 60 mg during the day was lost again overnight. I would make very little day-to-day progress until I split my dose. The progress I made during the day wasn't lost on a split dose. The inflammation would steadily decrease every day. Going from 60 mg back to zero in 30 days or less was something I did routinely for flares of uveitis.

Uveitis was interesting because both my ophthalmologist and I could see the inflammatory cells inside my eye. There are different types of floaters. Some are harmless but there other onesthat multiple rapidly. It made sense that inflammatory cells are called white blood cells because my vision would rapidly become foggy. I could watch a dense white fog roll in and that was how I knew I had a flare of uveitis.

Ophthalmologists actually grade the severity of uveitis using a slit-lamp microscope by counting these exact cells, measuring what they call "cell and flare"—where "flare" is the foggy, misty look caused by elevated protein levels, much like headlights shining through a heavy midnight fog.

Light flashes were another problem and I had those too. I would see fireworks out of the corner of my eye and reflexly run away. I felt foolish when someone else was with me. There was never an explosion and people with me never saw anything.

I had a similar first -time experience, almost 14 years ago. I was hanging Christmas lights, and suddenly had excruciating pain in my arms. I took a hot shower and cried the whole time. The initial pain got better, but I still had shoulder/ arm pain. I went to several doctors that couldn’t figure it out, but finally one did and put me on 2 weeks of prednisone. He said if it imptoved dramatically, and my CRP and ESV came back elevated, he was sure that was what it was. The prednisone helped very quickly. You will feel a lot better after you start on that. I function quite normally between “flares”. Don’t despair. I will say, I am on prednisone now, tapering-off, and it’s sometimes difficult to say whether it’s prednisone or PMR with my symptoms. A lot of people have it and lead normal lives, just taking a “ burst and taper” dose of prednisone. I’ll also mention, I am 70 years old, and relatively active( except for breaking my foot a couple of weeks ago)🤪. (No, my bone density is good, it was the platform tennis shoes that weren’t). Prayers for you, there are a lot of us with PMR. Just keep doing what you enjoy and take it one day at a time….