What age were you diagnosed?

@leighton68 well shucks. This PMR is a real confounding disease.
The very best of wishes.

@e441300 The first time when the doctors didn't know what I had my rheumatologist prescribed me quickly prednisone so the symptoms did not get as severe as now. This time I really WANTED to get diagnosed so the rheumatologist didn't prescribe prednisone before my appointment for a PET scan. Meanwhile the pain got worse and worse to a point I couldn't move when waking up. Very painful fingers and wrists during the night so I couldn't sleep for weeks.
First flare took me 4 months to taper from 15 to 4 mg. But the fifth month I had to take 4 mg I stopped taking it (did not know it was a bad thing to do) Pain in shoulders and stiff muscles in my legs remained for about 3 years and then finally disappeared.

I was 49 when diagnosed, now 50 so it's been 1 year, but it's had a dramatic impact on my activity level. I started at 20mg prednisone and felt invincible lol... weaned once unsuccessfully, this is my second time off prednisone and trying to ride out the discomfort med-free, with massage therapy, red light therapy, magnets, diet, exercise, you name it. Feel fragile and pain in hips/shoulders/back every day until about 3pm, but I'm holding on to hope that my body will make the adjustments it needs to over time, am trying to be patient and stay distracted - there's a good possibility I am just being naive, who knows??

One more note - I'm so grateful for this forum as nobody around me can understand what it's like but you all do, so hugs to everyone.

I was about 43 when I was diagnosed with PMR, which was 38 years ago and have been on and off prednisone, mostly on. I had classic symptoms. Pain in my shoulder girdle and hip girdle for no reason and fatigue. 10 mg of prednisone was a wonder drug. Within 6 hours of taking 10 mg I was a new man no pain. The problem was after tapering to zero about a year later the pain returned. Went through the cycle again. No pain for about a year then the pain again. This went on for years the the time between pain was getting less. Went on 2.5 mg prednisone and was without pain for about 4 years. Then the pain returned. Stayed on 2.5 for a while then went to 5 mg per day. During this time, about 30 years, I saw 4 different rheumatologists. The fifth rheumatologist thought I didn't have PMR due to my early diagnosis. He tried hydrochloroquine, but I had bad dreams, then he tried sulfa.... and it didn't help. Then Kevzara and had no problem reducing prednisone from 15 mg to 2.5 mg. When I went to 2mg had slight pain and when I went to 1 mg had lots of pain. Back to 2.5 mg prednisone and Kevzara. After being on prednisone for 38 years I am in the dark as to all the side effects. I do not notice any but thin skin. I bleed easily with only the slightest abrasion. I have had many bone density scans and they are all normal probably due to all the exercise I get. I have exercised excessively my whole life. My rheumatologist wanted to put me on Flosamax (sp) but I declined. I am 81 years old and still exercising excessively.

Does anyone have any pain in their hands? My Dr. said the pain wasn’t related to PMR. I disagree with him. Never have I had had pain before being diagnosed with PMR. Started at 20 mg prednisone 8 months ago and now on 7mg. Hands are feeling a little better but still have some pain.

@e441300 I was tested for tendinitis had X-Ray of my hands and had ultrasound on both hands. None of the test showed anything. Thank you for the information. I see my Dr. next month and will let her know about the findings.

@marianne2025 Diagnosed 12/2025. Excruciating pain in shoulders and hips. Had X-rays done before bloodwork thy showed only a slight osteoarthritis in one hip. Bloodwork led to PMR diagnoses and after starting on 20mg then I am Now down to 4mg and hoping to be off prednisone in a month or two. My hands, in particular middle finger on left hand (tight and stiff) and occasionally wrists on the thumb side of hands sore in morning. My rheumatologist believes my issues could be osteoarthritis but hasn’t completely ruled out that there could be a chance of rheumatoid arthritis. As my slight pains haven’t affected quality of life I have taken a wait and see attitude as I
Move forward

@ndep I agree with you. Gone are the days of blindly listening to our doctors. We must be collaborators, by educating ourselves and practicing good communication skills.
Being very new to PMR, the one thing I have learned, it’s not a one size fits all disease. I do fit the standard profile of being older, 65, Northern European descent, elevated ESR/CRP, but my worst pain is hips and knees. I have pain in my shoulders but nothing like in my legs. I don’t hear many people mention knees with this diagnosis. I’ve always had healthy knees, but now have difficulty squatting or kneeling on them. They are my greatest source of pain next to my hips. I’m on a 20 mg taper. So far my symptoms are vastly improved but nothing like the miraculous disappearance I hear from others. However, I will take it. Keep leading the charge!

@franklinlala I want to let you know that my knees were swollen and painful too. Even turning to the other side of my bed was difficult and very painful. The balls of my feet, wrists, fingers, shoulders, hips, arms, actually too much to mention.
The severity of the pain changed for every part of my body when new symptoms of pain occurred and were even worse than the ones I already had. Take care!

Well, mcds80, I am 65, for 4 more days! Not in the younger group, but feel and look like I am! I diagnosed myself last year after symptoms began in June then saw my PCP. I am a retired P.T. and know my PCP well and some about rheumatic diseases. I researched what the heck was going on with my 'out of the blue' debilitating pain keeping me from my weights and yoga and squatting and crawling into bed and all the life altering symptoms that comeceith PMR. I had to hold onto walls and furniture to get to the BR in the mornings. It'd last t/o the day, waning somewhat by 3pm. I began 10 mg of prednisone and within 3-4 days all symptoms were miraculously gone! PTL!
I had a 2nd F/U visit today and ESR/C- reactive protein pulled today. Will get results tomorrow. I am told I need to be on the prednisone 6 mos before tapering. I want to come off ASAP, but understand from our fellow bloggers that may be a rollercoaster. I started the prednisone early Oct.
I have recovered such that I am back in all my normal routines of am weights and pm yoga with no symptoms. I have an appt with a rheumatic doc in March. On the books since Oct- they stay booked. I wish you the best and am glad you found this support group. I love these folks and have learned so very much by being a part of Mayo Clinic!