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

I was diagnosed in beginning of Dec 2022 after having experienced a few weeks of extreme fatigue and weakness. I was feeling like I had been doing pushups all night when waking up. During the night it was hard for me to even move my bedsheets. I also had pain in unusual places. I say that because I already had been suffering with chronic pain from Ankylosing Spondylitis for many years. Usually my pain was hip down, but now it was hips up - upper back, ribs, arms, shoulder, neck. Plus some headaches, not something I normally have.
My rheummy pretty much said after a few questions you probably have PMR, which I never heard of. I am I like to say ONLY 56 (lol). Anyway he said we try a course of steroids if I improve well that’s it. So I did a Medrol pack (which I have had many times over the years having Iritis connected to my AS) but I never wiped out all my symptoms like this one. I felt awesome. That lasted about a month and then I noticed PMR symptoms coming back so I took another Medrol pack hoping for at least another month. Well I took my last dose on a Thursday morning by Thursday night I could barely lift my arms. After a couple of days I couldn’t take it anymore. I called the rheumatologist back and he said well you’re gonna have to just be on steroids for a long time. Let’s start with a low dose and see if it has to work up higher. We started with 5 mg - it helped but not enough so then I had to go up to 7 1/2, which I pretty much have been on for about two months. I am due to go back and see him for the first time after being diagnosed, which is the purpose for this post.
Any helpful hints on questions I should ask now that I am going back. It seems pretty well under control at the 7 1/2 although I can tell it’s still there and if I overdo it, there’s definitely flares. Potentially I could do a little better by going higher, but reading all this tapering off stuff not sure if it’s worth it? Any thoughts are welcome. Thanks, wholeness and wellness to everybody.

Hi, I'm just about where you are except a couple of months ago, I tapered down from 3 mg to 2 mg and had a flare up. Went back to 3 and then to 4. I then tapered down by 1/2 mg every 3 weeks and just reduced a week ago to 2 mg with good results. I find that taking two Tylenol with my Prednisone in the morning helps a lot. I plan to stay with 2 mg for at least a month and then try 1 1/2 mg. No one wants to stay on Prednisone long term, but where would we be without it? My advice is to try 1/2 mg at a time.

Interesting post as I also have been dealing with AS (since 1972, give or take). Over those decades I managed the pain with exercise and meds. AS has run its course and most pain gone as many joints are fused. Luckily I am not bent over but cannot paint a ceiling or catch a pop fly ball to save myself.

You did not mention your SED Rate and CRP readings. My rheumatologist uses those to help determine best Pred doses and timing of tapers. Not sure I always buy into that science as there are times i’m hurting and he is disinclined to raise my dosage. Currently at 4mg and will start 2 in day and 2 in middle of night, as mentioned in postings. Then down to 3.5 in a week or two. Wishing you and others all the best.

I am not sure of what AS is.

Interesting post as I also have been dealing with AS (since 1972, give or take). Over those decades I managed the pain with exercise and meds. AS has run its course and most pain gone as many joints are fused. Luckily I am not bent over but cannot paint a ceiling or catch a pop fly ball to save myself.

You did not mention your SED Rate and CRP readings. My rheumatologist uses those to help determine best Pred doses and timing of tapers. Not sure I always buy into that science as there are times i’m hurting and he is disinclined to raise my dosage. Currently at 4mg and will start 2 in day and 2 in middle of night, as mentioned in postings. Then down to 3.5 in a week or two. Wishing you and others all the best.

What medication are you currently on for AS? Biologic?

I did an Enbrel trial back when it first was available but it had no effect. My PCP sort of predicted this as the AS had run its course; the inflammation was history; and I was left with fused joints and less pain. I got off the NSAID & Oxy and have taken Tylenol ever since. I don’t drink any alcohol so that made the transition to Prednisone tapering 3 years ago easier. Suspect others may have different experiences with biologics. I suspect they would have made a huge difference if available in the 70’s.