Polymyalgia rheumatica: Any thoughts on my taper plan?

I'm glad you feel better at 5 mg. I felt like I had a lot of doses during my taper where I felt better - 40, 20, 12.5, 7, 5, 3, and 2. 5 wasn't too bad, and 3 was better, at least for me.

I just googled what percentage of people with GCA have flares, and it said approximately 34 - 74.5, depending on various factors.

Wish you the best also my friend!!!

Glad to hear your treatment is working well for you. I never had to be on Actemra though. Any side effects? Wish you well.

Absolutely correct.

When you tapered from 3mg to 2mg, did you go directly from 3mg to 2mg? I went from 3mg to 2.5mg to 2 1/4 and then I'll go down to 2. I will go down a 1/4 every 6 weeks. Fingers crossed it works.

No, I don't have any side effects from the Actemra. Although there are some risks to it, I really like it a lot. It looks like it will save me from being on prednisone for another year or more.

Yeah I hope I can get back down to 3 and that it will keep my PMR and GCA at bay. I could live with that. Good luck.

I slowly deteriorated until I saw the rheumatologist, about 6 months after the referral was made. I stayed on a low inflammation diet (ate so many blueberries that my urine turned pink), went to PT and had a PT who was perfect- familiar with my local Ys and worked with me to jave a complementary gym program going. But I was rather severely affected by late summer....PT told me "At XYZ( my favorite Y branch, and is also a medical fitness facility with an amazing pool), the parking is not close. There will be days when all you can do is get there, walk in the building with your bag, and turn around, walk back, drive home. I'm going to count those days as a Win." And he was right. Some days I could barely walk into PT with my cane.
I also took Turmeric and Tylenol. It was really rough.

My experience is similar to yours. I started it at 4 mg of prednisone for my PMR and I stayed on that for several months before I started to taper. I tapered from 4 to 3 and I was fine. I stayed on that for about a month and then I went down to two and that’s when I experienced some pain. I went back up to three and stayed there for another week or two and then I went from 3 to 2 1/2 and I have a little bit of stiffness, but it’s tolerable.
I will stay at 2 1/2 for about three weeks and then try to go back down to 2 and see how I do.
Everybody is different and everyone reacts differently to the taper.
I’m just praying that I’ll be able to get off of prednisone soon.

That sounds really bad, and a reminder that it takes a long time to see rheumatologist, and when you are in pain it’s like forever. My GP follow up is this afternoon and I am anxious for the appointment. I hope my inflammatory labs are still normal. I know that I could still have PMR, but I will hope they are still low.
My PT does not think it is PMR and says that while I am still very sore and stiff, she sees progress. In the meantime it cannot happen fast enough. All my soreness and stiffness are in my piriformis, glutes and hamstrings but walking is painful. Sleeping better at night. The PT exercises make me sore, of course, and my rotator cuff is firing up. I realized I have a right shoulder problem last year when I started playing pickleball. When something like this hits you all at once, it is very scary, as many have said!