PMR/GCA

Doc, I have been under treatment for GCA and PMR for 12 months. I started at 60 mg of prednisone per day, and stayed there for 6 weeks. I have tapered over the past year to get down to 2 mg per day. I hope to be finished with prednisone in about 5 weeks. I have also been taking weekly Actemra injections for 10 months, and I will continue to take them for at least a few more years (I assume). I haven't had any pain or symptoms at all from the GCA or PMR during the past year. I think that is from the combination of prednisone and Actemra and a relatively slow taper. I can provide more information about my taper if you're interested. I'm 71 years old.

@docmeehan Hello! Did you ever get the information that you were looking for a year ago? I have the same question now (April 2026). I declined the biopsy for GCA because I was already on Prednisone for a several weeks and my understanding is that it's quite possible to get a false negative. I was treated with 60 mg. of Prednisone for a week or so, followed by 40 mg. I was given the go ahead to taper because my inflammatory markers are now normal.
My PMR symptoms were hip/groin. I had no shoulder involvement or severe headaches. I've had a peculiar itch on the crown of my head with light tenderness for several months. Now that I'm tapering, I'm more aware of a dull headaches. But I have read that Prednisone on its own can cause headaches for different reasons. Needless to say, I can't quite relax about this GCA business. I also declined the Actemra at this time for different reasons. I am being monitored by Rheumatology and I had my annual eye exam.
I've chosen to remind confident that I will have a successful taper and remission.

@jeff97 I would like to hear about your taper plan. Thanks

@retiredphil I ended up taking prednisone for a little less than 14 months. After staying at 60 mg per day for 6 weeks, I tapered 5 mg every 2 weeks down to 20. I stayed at 20 for 4 weeks, then dropped 2.5 every 2 weeks down to 10. I stayed at 10 for 4 weeks, then dropped 1 mg every 2 weeks down to 5. Then I dropped 1 mg every 4 weeks down to 0.

My rheumatologist was a little conversative with my taper due to vision issues from the GCA at the time of my diagnosis. My vision turned out ok.

2 weeks after I stopped prednisone I had some minor withdrawal issues for a couple of weeks - fatigue and some depression and irritability.

It took somewhere between 4 and 6 months to feel completely recovered from the prednisone. I think it took that long for my adrenal glands to be fully functional again.

Like my earlier post said, I'm still taking weekly Actemra injections. I hope to go to every other week in about 3 months.

@pah17
Did you see an ophthalmologist for your recent eye exam or a different specialist?

@kjoed53 I saw my Optometrist for an annual comprehensive eye exam which included digital scanning and having my eyes dilated. She pays particular attention to my eye pressure and the optic nerve.

@kjoed53
I was curious because my rheumatologist wants me to see an ophthalmologist instead of an optometrist. I don't mind because I generally see an ophthalmologist anyway, at least I have for the last 30 years or so.

@jeff97 I guess you were able to taper that fast because of Actemra. Is that right?

@retiredphil Yes, that's right. I took prednisone a little less than 14 months, and my rheumatologist plans for me to take Actemra for at least 3 years. Some people with GCA recover faster, but my case was fairly severe.

@kjoed53 Thank you. I think I want to have that conversation with my Rheumatologist to be sure. I started out well with him. Still like/trust him. But with any busy office, I'm not sure he has lasting patience for questions coming from patients like me who have limited insurance. His office got emergency authorization for Actemra. And I appreciate that. I will still be paying over $700.00 out of pocket each month for the IV infusion for who knows how long. After my $2,000.00 max out of pocket, I'll be OK for this year. So, I haven't ruled that out if need be.
I also declined the biopsy because I was already on Prednisone for several weeks. He bumped be up to 60 mg. for GCA.
Another situation has presented itself wherein I need a tooth extraction and we both agree that it might not be a good time to introduce yet another med to the picture. Besides Prednisone I'm new to Eliquis, a blood thinner and I've been on Boniva.
He knows that I'm not convinced that I have GCA. Really my only symptom is an itchy scalp (crown of head) and sometime dull headache which doesn't even call for pain med ~ more what I feel when I'm hungry or dehydrated. My Rheumatologist does admit that GCA is very difficult to tweak out. Really, my head hurts just having to think about all of this day in and day out.
I am forever grateful that I have insurance, that I live in an area where there are exceptional practitioners and that I didn't deal with the PMR pain for very long at all. Now if I have a successful taper, I will really be one of the truly fortunate ones judging from what I read from most who post here