I folks. I haven't posted for awhile, but I did listen to all your previous advice and made some serious lifestyle changes. It's been quite hard emotionally giving up all the things I love to do, but it's in the hopes that I will get through this and eventually start to reclaim some of my activities. In the meantime, I am resting.
But I am concerned about the high dosage of prednisone I am on given that I still have symptoms.
Quick refresher:
- I was diagnosed in January and given a ridiculous tapering schedule which totally messed me up
- I started over again mid-February with 30mg and managed to taper to 20mg by mid March
- tapering below 20 didn't go well, so back to 20 in April and stayed there until I got back to Canada to see my dr in May
- my CRP was 30 in January and in May it was still 15. My dr. said he was surprised the CRP was still so high
- my dr said to remain on 20mg until I see the specialist in August
So I've been on 20mg now for 3 months. I am okay as long as I do absolutely nothing. Any little activity and I will require at least one entire rest day, maybe two, and I'll have pain in my arms. I am utterly exhausted. I would say the pain is about the same but the exhaustion is getting much worse.
So ... my question is ... is 20mg a lot on an ongoing basis for PMR? Sometimes I think I should take more. Is anyone taking this high a dosage on a long term basis without even trying to taper?
Thank you so much for your advice. I would really feel like I'm all alone in this without you guys!!