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Thank you for your post. It is extremely helpful. I was diagnosed with GCA in November 2024. I started on Actemra injections in March of this year. At that time I was down to 20mg of prednisone from 70 mg when it was first prescribed in early October of 2024 when it was suspected that I had CGA.
I am curious that you are still on 5mg of prednisone. My last taper was down to 2.5 mg three weeks ago and this past Sunday I stopped it all together as prescribed by my rheumatologist. I am feeling pretty lousy right now and I am suspecting that it is from the prednisone withdrawal. I am wondering if the plan is for you to stop prednisone altogether and if not, why you are continuing on the prednisone still.
I look forward to hearing back from you.
Thank you.
Replies to "Thank you for your post. It is extremely helpful. I was diagnosed with GCA in November..."
Welcome to Mayo Clinic Connect @yizzy55! I’m glad you found us. Not to worry about prednisone dosages, they change all the time. And they are hard to get off! I just now tapered off after 7 years! Every time your disease gets a little bit out of control, you start pred again.
Are you having any side effects from the prednisone?
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Sorry to hear you're feeling lousy. I was tapering 1mg every 2 weeks, until I got to 5 mg. I wanted to stay at 5 for a month. I want to make sure that my adrenals wake up. I don't think the actemra assists the adrenal glands. It's allowed me to taper, without a flare. I had a flare in December, when I got to 10 mg. I have an appt with my rheumatologist on Monday. I plan on starting 4 mg, on Tuesday. She let's me control my prednisone dosage, as I see fit. Good luck to you.