PMR at 48 yrs old

Terre, I too feel strongly that my PMR was caused by the shingrix vaccine. I too am not pleased that the medical community is not aware or taking this seriously. I’m at year one, though only month 8 of being treated (took 4 months to get a proper diagnosis). I am on steroids, as I was not able to ambulate arms and legs and in extreme pain with visions issues and apparent GCA, jaw stiffness, vision problems, pain in temples. So had to ramp back up to 15 mg. I’m tapering very very slowly, .5 mg every two weeks this time in hopes I can forego the rebound. I wish I could get off of the steroids. I walk every day, uphills ( net 600 ft elevation change) on trails For 3-4 miles, which has kept me sane, but my exercise otherwise has been sporadic, as I get Severe back pain all too often. Using CBD & Passion flower tea or tincture for sleep, as that is what seems to be a precious item I am not always securing each night.
I have not gotten the flu shot this season, and know I “should” but I really am fearful of the reaction. Rheumatologist says to get it, and I’ve read from others here on the site that they mostly have gotten it. Perhaps later this week.

Hello, I am new to the site and responding to the original question on diagnosis under 50. I had just turned 49 and was feeling good - active, healthy weight, determined to stay on track after 50. A few months later (on vacation in August) I started to have the onset of shoulder/upper arm pain, then hips/thighs.... symmetric, worse in the AM. By October I could hardly function, get dressed, get out of a chair, etc. Saw several docs (GP, rheumatologist, neurologist, 2nd rheumatologist) and had many MRIs and blood tests. They always said it couldn't be PMR because I was "too young". My mother had PMR at 56 and my paternal grandmother at a later age.

First rheumy eventually agreed to let me try prednisone at a stingy 10 mg. It may have helped around the edges but didn't kick it. Finally got a 2nd opinion and he grudgingly agreed to let me boost to 20mg, which made a huge difference. He still seems reluctant to really diagnose PMR, vaguely implies there could be something else going on. I've tapered to 4.5 mg but still have frustrating level of pain, but I guess tolerable. Trying to stay active. He wants to shift me to hydroxychloroquine or methotrexate, which both sound a bit scary, esp the latter. I have a video visit with him later this month, so if anyone has tips on those I'm eager to hear!

On vaccines: I've had flu vaccines every year for decades without incident (was 6+ months before initial onset), but I respect what I'm hearing that others have had reactions. I had the first COVID vaccine dose (Moderna) a few weeks ago without significant side effects ... I did feel extra stiff a few days later but I also may have been tapering below 4 mg too fast. I am definitely going to look into this Shingrix vaccine concern, as I suppose I'm due to get it.

Hello @klsnyc, Welcome to Mayo Clinic Connect. I was 64 when my first occurrence of PMR hit but the pain and stiffness sounds like the same symptoms you had starting minor and then debilitating and could hardly move. Mine is in remission now but I started both occurrences at 20 mg of prednisone. The first time I took 3-1/2 years tapering off and there were times I went up and down. I would keep a daily dosage and pain scale log so that you can keep track of how you feel at each taper and in between tapers. I've had both Pfizer vaccines and my first Shingrix vaccine with minor side effects so I'm happy about that. You've got the right attitude for dealing with PMR. Another thing that helped me was getting my rheumatologist to prescribe 2.5 mg and 1 mg prednisone tablets as well so that it's easier to go down in smaller doses. I went back and forth between 1 mg and 1/2 mg my last six months tapering off the first time around with PMR until I could finally stop taking it with only minor stiffness and aches.

Have you made any lifestyle or diet related changes?