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.