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.

I recently stopped getting updates so just have signed up again. Question now is I've been on prednisone starting at 20 mg for about a year and a half. I'm down to 3 mg holding there. Pain is really bad in the morning, 8 out of 10 but gets better after I take my prednisone. Anyone else experiencing this? I know the normal answer is to go up but I want to get off prednisone so bad. My bones are awful.. I'm 76 years old and very active still. During the day I can still walk and be very active. I just know I can't go down in the dose right now. Any ideas?

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.

There’s some very helpful posts here on tapering off prednisone. You might find it helpful after a month or two on 7.5 mg to try very slow tapering (no more than 10% drop in dose when trying a lower dose). See image . One day of 7 mg then 6 days 7.5. 1 day 7 mg then 5 days 7.5 and so on - see posts on very slow tapering & image attached. Good luck with it. Good news that you r getting relief with prednisone.

I recently stopped getting updates so just have signed up again. Question now is I've been on prednisone starting at 20 mg for about a year and a half. I'm down to 3 mg holding there. Pain is really bad in the morning, 8 out of 10 but gets better after I take my prednisone. Anyone else experiencing this? I know the normal answer is to go up but I want to get off prednisone so bad. My bones are awful.. I'm 76 years old and very active still. During the day I can still walk and be very active. I just know I can't go down in the dose right now. Any ideas?

I recently stopped getting updates so just have signed up again. Question now is I've been on prednisone starting at 20 mg for about a year and a half. I'm down to 3 mg holding there. Pain is really bad in the morning, 8 out of 10 but gets better after I take my prednisone. Anyone else experiencing this? I know the normal answer is to go up but I want to get off prednisone so bad. My bones are awful.. I'm 76 years old and very active still. During the day I can still walk and be very active. I just know I can't go down in the dose right now. Any ideas?