← Return to GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

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@issyb

I have PMR /GCA started out at 40 mg prednisone and now at 20 mg. Was wondering why everyone here is doing prednisone and acterma together. My rheumatologist said we can consider acterma if needed??? Not sure what that means. I am tapering very slowly on prednisone 5 mg every 3 weeks. Had blood test yesterday and inflammation markers were GREAT !!🙏❤️🙏

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Replies to "I have PMR /GCA started out at 40 mg prednisone and now at 20 mg. Was..."

Prednisone controls inflammation but has side effects bone loss etc Actemra is a biologic alternative,less side effects. Once you get to 5mg of prednisone reducing by 1mg every 2 weeks worked for me. I have maintained good blood test results since being on Actemra only since
Oct 2021. I am now at 14 days per dose working on reducing to 21 days.

I can only speak to my case...my GCA diagnosis was missed for over nine months, and I woke up in 2019 blind in one eye, with no pain. So my case had a running start, and I had some damage to the optic nerve in my other eye. I started on 125 mg of prednisone per day...I was never given pulse IV therapy at the hospital. One month later, I was put on 80 mg methylprednisolone plus Actemra. The rheumatologist was reluctant to start me on Actemra because I'd had two diverticulitis attacks and two previous stomach bleeds. I was cautioned, but I chose to start it to try to save my other eye.
My present rheumy has described it as 'a steroid sparing agent', believing it would help me get off the prednisone faster. For three years every time I got near 20 or so, I would have a flare. In February of this year I got to 10 mg and now take 3mg daily with my Actemra injections weekly.
I'm 82, almost 83, and he told me if I get to zero, he is going to keep me on the injections. I also see a neuro-opthalmologist regularly to monitor my right eye.
When you take Actemra, your inflammatory markers are always normal ~ you have to be treated symptomatically. I've been fortunate all in all because it will be four year anniversary when August rolls around. But..I still have my right eye.
So it is a pretty individual thing; we are all unique.💞