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

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@redboat

Thanks for your comments.

My Prednisone tapering schedule goes down to 10 mg in 2 weeks, and then slowly decreases by 1 mg/day every 2 weeks after that. So far, there have been no relapses. If no relapses occur, the schedule shows me completely off Prednisone in October. I am thankful that at my current level (20 mg/day), my sleep has returned, and I am getting 8-9 hours per night. Due to the high dosage of Prednisone I was on, I only slept about 4 hours a night from March until early May, and that was tough.

As I taper off Prednisone, there are various weird pain occurrences, but so far they are transient, except for the nerve neuropathy in my hands and feet, and mild burning in my lats, shoulders, and upper arms. Those are always there.

Early on, before I was on Actemra, my inflammation markers did not go to normal with 20 mg/day of Prednisone. Also, before I was being treated, the inflammation markers were extraordinarily high; my CRP was about 10x higher than most with PMR before they are treated. I have seen clinical instructions that anyone with these two characteristics should be considered as likely to have some level of non-cranial Giant Cell Arteritis (GCA). My Actemra & Prednisone treatment regiment actually is almost exactly the one used to treat the GCA patients that received weekly Actemra injections reported in the New England J. of Medicine.
https://www.nejm.org/doi/full/10.1056/nejmoa1613849
Perhaps non-cranial GCA explains some of my symptoms, such as a strong feeling of charley horse in the center of both quadriceps. This was experienced before the proper levels of medication were found.

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Replies to "Thanks for your comments. My Prednisone tapering schedule goes down to 10 mg in 2 weeks,..."

I'm so happy to hear that your regimen of medication is bringing you a measure of comfort! Sometimes it is hard to believe there is an 'end-game'~~the rocky road smooths out~! I am on pred and Actemra and am down to 3 mg per day with no bumps, with the exception of those 'feelings' that pass in a few days after tapering. I taper by .5mg every 3-4 weeks but I'm staying put at three until I make a few trips. Good for you. 💞