Connect
Discussion
Comment receiving replies
Replies to "Thank you for your quick and helpful reply. And thank you for the links. I now..."
Polymyalgia Rheumatica (PMR) | Last Active: Jun 29 9:26pm | Replies (9)
Comment receiving replies
Thank you for your quick and helpful reply. And thank you for the links. I now see the problem--IL-6 inhibitors are necessary as long as there is something that needs to be inhibited--that is, the underlying PMR which has not been "cured."
Kevzara now costs $2000 a month and while my insurance covers it this year, I suspect next year may be a different story, in which case I will have to give it up.
Did you taper Actemra or quit cold?
Replies to "Thank you for your quick and helpful reply. And thank you for the links. I now..."
Connect
@cwbf
I didn't have a choice about stopping Actemra abruptly. I started Actemra on January 1st, 2019. I was off prednisone by 2020 but then Covid hit the world. Actemra supplies were being diverted to seriously ill Covid patients during 2020.
I didn't ever test positive for Covid. Because of supply chain problems I wasn't able to get any Actemra for 6 months. I was getting "seriously ill" with pain after 4-5 months and had to restart 15 mg of Prednisone along with Humira (TNF inhibitor) which didn't work.
My Actemra supply was "interrupted" for about 6 months until the supply of Actemra improved. I got the choice of continuing Humira or switching back to Actemra. I quickly decided to restart Actemra and stop Humira. I tapered off Prednisone again in a few weeks.