Adjusting to life with temporal arteritis

@istraz34 I'm glad you're doing okay and your head pain is better, hopefully it doesn't change in the evening, I'm really paying the price from helping our daughter get ready for her chowder party last week and the work of winterizing our boat which is taking forever because neither my husband nor myself are consistent because we're both a mess. Just super fatigued. It's just how it goes, good days and bad days.(Sorry to vent here) Now I have this terrible itching on the tops of my hands, seems to be on the inside, scratching it doesn't relieve it and it woke me up during the night. Researching it now to figure it out. It may be from the Prednisone. You're right it does work differently on everyone. Wishing you well and hoping you have a pain free evening. Let me know. Blessings.

@kobellava Thanks and hope your situation improves sooner than later!

@istraz34 Took a nap, much better thank you!🙂

@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.

@kayept

Artificial intelligence has explained things this way.

"The Formulary Shift
To reduce costs, prominent insurers and Medicare Part D plans (such as Independence Blue Cross and UnitedHealthcare) aggressively removed Actemra from their formularies or shifted it to a non-preferred status. Plans systematically mandated a switch to lower-cost tocilizumab biosimilars—primarily Tyenne and Tofidence—often establishing automatic prior authorization transitions to force patients onto the new alternatives."
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Actions lead to reactions. I don't know if this was what happened or not but it sounds like it. There must be a big demand for IL-6 inhibitors.

Per my ophthalmologist, I am on 2.5 Prednisone for 2 months then will be weaning to 2 mg for 2 weeks, down to 1.5 every 2 weeks.... Hoping this gradual taper will work better then weaning weekly. Good luck to all!!!