Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

@cyndip Thanks for this plan. I think I will try it. I have been using the "dead slow nearly stop" plan and it has worked but takes me 5-6 weeks to drop .5 mg, which is all I'm comfortable dropping at once due to experience with flare-ups. I may finally be able to speed it up. That's great that you are at 2 mg!. I'm at 6 mg after almost 5 years on prednisone. I have tried all the other drugs (methotrexate, Kevzara, Actemra), still on Actemra infusions. My conclusion is that the taper can't be pushed. When my body is ready to let go of these diseases (PMR, GCA) I will be able to get off the drugs.

@linda7 wishing you luck! This is not a lot faster than what you’re doing, but I hope it helps! It’s the only thing that has worked to get me under 5 mg. I agree with you that the taper can’t be pushed - especially for some of us.

I was diagnosed with PMR last October. Have been on 6 mil of predisone with success. Recently had a really bad flare up in hips and legs (mostly on left side). Can I increase the predisone temporarily to handle my pain?

@dga76 always let your doctor know and they likely will bump you back up...this is pretty common

@joyl263

I agree that most doctors are "flexible" when the pain gets hard to tolerate. My rheumatologist only had an issue when I took more prednisone without telling her. I have to confess that I was very guilty of not telling her when I increased my dose. It was hard for me to tell someone every day about how much pain I had. I knew that I should not increase my dose without a reason. Unfortunately my reason was always because of too much pain.

I started showing symptoms of PMR in August of 2025 at age 61. I am a male. I had a mild bicycle accident on 08/02/2025. Had minor scraps on my right elbow and arm. Initially I was fine but after a few days I developed right elbow bursitis. Did not see a Doctor and the elbow seemed fine a couple weeks after, However my neck, shoulders, arms, back and left knee started having what I would describe as muscle pain enough that I was sleeping at most 1-2 hours a night and would be up at night in such bad pain I would be sitting in tears trying to digest what was going on. I finally went to see a physician in my primary Doctors office as my doctor was a couple months out for scheduling appointments. Initially did labs this would be around the 10th day of September. Had very high inflammation markers and labs were not good. Again the Doctor did not know what to do and sent me to orthopedic Doctor who determined my bursitis needed an antibiotic shot and a prescription for antibiotics. This served no purpose as the pain was still intolerable. After seeing 4 different physicians I went to a 5th Doctor he was an older Doctor who decided to put me Z pack of prednisone this was in the 3rd week of October which was right after I had went to the ER at the hospital and they gave me 2 shots of antibiotics in the both arms and sent me home. I am all over the place here and I am sorry if you are reading. But the Doctor that prescribed the prednisone was the only relief I got in the first 6-7 weeks I was having symptoms. The frustration level was high but at least I had finally got some relief. I did go for my annual physical on 11/04/25 and my primary Dr sent me to the Arthritis Specialist but I could not get in until 02/03/26. However my primary Dr did get me back on 10mg of prednisone so things were manageable. I went back to primary Doctor on 12/02/2026 and she diagnosed PMR. This was the first time I heard of this. So they lowered the dose to 5mg until I got to see the specialist. The first thing the Arthritis Doctor said is why did your primary Doctor not call we would of got you in immediately. Anyway 20mg for a week 15mg for a week then 7.5, then 5mg and then 2.5mg each for a week. Seemed to be close to normal. Then 6weeks later back on 5mg cause of arm shoulder and neck pain this was for 2 weeks and now I have been off prednisone for 8 days. I am now 62 yrs old and last July I was walk/running 3 miles 4X a week and now running is not an option. However I do appreciate the fact I can walk again and I hope no one has to go through what I experienced. So now I am feeling 90+%. This is just a way of venting, Thanks for listening whoever might find some correlation. Bill

Welcome @bkearbey1, Sorry to hear that you have officially joined the PMR club but happy you found Connect. You are not alone and there are many of us that have been through struggles with PMR and have learned from each others experiences. Thanks for sharing your journey with PMR so far. I've had two occurrences of PMR and thankfully it has now been in remission for the second time for over 6 years.

You might find it helpful to scan through the many other discussions in the Polymyalgia Rheumatica (PMR) Support Group if you have any questions. Here's the link to the discussions in the group - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/

Hello, I was diagnosed with PMR in late fall of 2025. At that point it took 5 minutes to get out of bed using a walker to pull myself up. I had to use the walker to get around the house as well. Once diagnosed, I started at 15mg prednisone and I'm now on 7mg. I'm having some pain in my hips and shoulders but not enough to ask for an increase of prednisone (rheumatologist is aware). In January of 2025 I starting treatment for osteoporosis (Evenity). I started having dispersed pain but attributed it to the shots (2 shots once a month for 1 year) - I stopped the shots after 9 months because of the pain. At that point I was diagnosed with PMR. I think the shock to my body from the shots is what brought on the PMR. I have no way to prove it but I did contact Amgen and they put it in their database. I also left a note on the osteoporosis forum. Like everyone, I want off of the prednisone but I truly love walking, driving, socializing - my mobility! I'm able to get a DEXA scan in July and I've got my fingers crossed the Evenity helped my, off the charts (literally), osteoporosis.

On a more shallow note but one that is difficult socially, I'm losing my hair. Luckily I have enough to put it up and I use Toppik to cover the balding spots on the top of my head. Oh, and don't get me started on the size of my eye bags!

FYI - I had been decreasing 1 mg every two weeks but saw my rheumatologist a few weeks ago and asked if I can stay where I am for a while because my granddaughter is getting married on 6/6 and I don't want to risk a flare up. He said it was best not to decrease the prednisone when there is a large family obligation or you are traveling.

Best of luck everyone.

Stiffness in legs & arms

I was diagnosed with PMR in January. I’m in my late 50’s, female and work full time. I started with 15 mg of prednisone and have now tapered to 8mg. I feel like I’m feeling well physically. My problem is that I’m really tired as well as anxious a lot of the time. I’m also having disturbing dreams regarding my health. Is anyone else dealing with these types of issues? Is it due to the prednisone?