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

I'm kinda slow and skeptical and my memory not that great either about the genesis of my ailment. First of all it took quite a lot of testing before I was diagnosed and then with something I'd never heard of (after Covid another recent sickness sprung on us out of the blue) I felt it was just a catchall for a myriad of complaints. Bloodwork was the clincher apparently too many white blood cells and inflammation. Wallah! PMR! But I always hear of joints being affected which I do not experience but painful muscles I certainly had before prednisone. But what I suffer most from is tight muscles in my limbs. They've shrunken from when I was totally laid up but now they are as hard as rocks and woefully impede my flexibility and this is my major beef and nobody else seems to have this problem. It must be an auto-immune disease symptom because like any other sickness one usually starts feeling a little progress but with this it has not given an inch. The doctors are puzzled.

After 9 months of watching my mobility slowing suffer to the point of not being able to do everyday activities. I finally was diagnosed in Feb with PMR and started with 15 mg of prednisone. I was never was able to get on a lower dose and still had pain. In April I was diagnosed with GCA 50 mg of prednisone a day. I understand that we need to be patient with these diseases. We are fortunate that there is treatment and recovery in our future. This group has been so good for me to read each morning and feel like I'm not alone. I am beginning to have some side effects from the large daily dose of prednisone. The worst side effect is now I have shingles. I have terrible pain on the upper side of my back and a few bumps. I had the vaccine so I probably have a mild case because of that, but I was scheduled to start my shots of Actemra today and start lowering the medication dose. The doctor has put that on hold. Has anyone had a similar experience?

wow - i feel startled by your comment re: Actemra. A quick google search re: biologicals for PMR shows the site for KEVZARA and the recent FDA approval "To treat adult patients with polymyalgia rheumatica (PMR) who have had an inadequate response to corticosteroids or who cannot tolerate corticosteroid taper." i am only searching out new literature and reviews about PMR ( post 2018) The Am Coll Rheumatologists ( ARC) guidelines were published in 2015. this title from Feb 2023 is easy to read : "Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica". Christian Dejaco - first author. PS>My doctors are at Mass General and that was one of the sites for the clinical trial for Kevzara in PMR>

wow - i feel startled by your comment re: Actemra. A quick google search re: biologicals for PMR shows the site for KEVZARA and the recent FDA approval "To treat adult patients with polymyalgia rheumatica (PMR) who have had an inadequate response to corticosteroids or who cannot tolerate corticosteroid taper." i am only searching out new literature and reviews about PMR ( post 2018) The Am Coll Rheumatologists ( ARC) guidelines were published in 2015. this title from Feb 2023 is easy to read : "Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica". Christian Dejaco - first author. PS>My doctors are at Mass General and that was one of the sites for the clinical trial for Kevzara in PMR>

Hi. Just diagnosed, started on 15mg once daily, today was first dose. I’m concerned about blood pressure increase and weight gain. I have Hashimoto’s thyroiditis as well so my weight likes to stick to me! Any tips? Experiences from others? Thanks!

I am 68 and have been dealing with PMR diagnosis for going on four years. It started in late 2019 with the usual aches and pains, inability to pick things up, sore neck, shoulders, arms, and back of my thighs. I had no idea what to think, so I went to the ortho doc, thinking maybe pinched nerve? He alertly recognized that it was not a mechanical issue, because his father had PMR and he recognized the symptoms. He sent me back to my GP and advised to run the blood tests and try Prednisone. None of the blood markers for inflammation were evident, however a starting does of 20 mg. of Prednisone had me almost completely out of pain in a matter of days, so the presumption is PMR, or at least an autoimmune condition. I also have had reynaud's for many years, and five years ago starting noticing weird a weird lump at the tip of my left ring finger, which turned out to be a calcium deposit. I had that removed in 2021, but it came back and I had a second surgery on the same finger this year. I have bad arthritis in both thumb joints as well, which they think is just garden variety aging.

Anyway, I proceded a bumpy path down the taper, going off completely once and having to bump back up to 4 mg due to pain. This month I went completely off after a couple months at .5 mg every other day, all the while living with a moderate level of pain that others might not tolerate (just want to be off the "stuff"). I have been off for maybe a week and a half, and it's not going that well, so may have to bite the bullet and go back on something. I am completely fatigued, sleep disrupted, and my brain is a bit foggy. I am active... walk regularly, and on my feet most of the day, coffee drinker, moderate alcohol, decent diet, and have always viewed myself as basically "healthy," so it has been difficult for me to accept that I may not get better. I am interested to read about alternative treatments, but I seem to have no visible side effects from the Prednisone (other than the likely invisible ones like bone loss). I got lined out with a Rheumatologist in Seattle in 2020 as we don't have many specialists where I live, and she has been monitoring my Prednisone, and I go to a Hand clinic there for the calcinosis, but they all seem a bit baffled with me. The hand doctor keeps wanting to suggest Crest syndrome, but all of my blood stuff is normal (except the usual age-related med-high cholesterol and inherited hypertension, both under control with meds). The Rheumatologist reassures me that even 3 mg is nearly a placebo dose, but I am still leery. So I am grateful for this forum and the opportunity to read about other folks' experiences down this very weird road.

Welcome @amak23, It can be a struggle tapering off of prednisone while trying to get into remission. My first bout with PMR took me 3 and half years to taper off and it stayed gone for 6 years. The second time I had learned to change my lifestyle some with healthier eating and a little more exercise to control the stiffness and I was able to taper off in 1 and half years. It's been in remission for almost 5 years now.

Do you keep a daily log with your dosage and level of pain when you first get up in the morning?

Hi @vjs, My PMR is currently in remission. I had a terrible problem with weight gain the first time around so when it came back the second time I decided to eat healthier and exercise more which really helped. The following article has some good suggestions that might be helpful:

--- Polymyalgia Rheumatica Diet: Do's and Don'ts: https://www.healthline.com/health/polymyalgia-rheumatica-diet