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Adjusting to life with temporal arteritis
Polymyalgia Rheumatica (PMR) | Last Active: Oct 19 12:21pm | Replies (320)Comment receiving replies
I was diagnosed with GCA 3 years ago this past July. Was tapered off prednisone, then began Actemra shots every other week. I am now tapered down from the shot to once a month. I am in clinical remission, but my Dr. wants me to continue with the once a month shot. Had to switch to Tyenne because my state took Actemra off all the Medicare drug formulary’s & forced you to switch unless you got an exception, which I tried but was denied. Took Tyenne once, had no reaction. Then the Dr. called & said notification was received, they ran out of Tyenne, so back on Actemra once a month. Good luck to you on this GCA journey.
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@dbyrne
I have been on weekly Tyenne injections since April '26. Walgreens specialty pharmacy was unable to get the autopens nor the prefilled syringes. I had to scramble to switch pharmacies to Accredo, the preferred pharmacy of my Wellcare part D provider. They have had no trouble in getting one orvthe other. I had read on this MCC that the manufacturer, Fresinius, was not making enough to keep up with demad, yet, like you, I was denied the Actemra, although insurance would cover the monthly Actemra infusions in the doctor's office 100%!
I had one infusion ut decided to go with Tyenne to avoid driving 1.5 hours monthly for the infusions. I contacted Fresenius, but they were no help in explaining why they are not supplying the demand. I have been suspicious that government decisions may be driving this conundrum. My question is, how did you discover that your state took Actemra off the Medicare formulary? I am in Georgia, what state do you live in?
Thank you for your post and God speed on your journey.