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How hard is it to get on Actemra (Tocilizumab) with PMR?
Polymyalgia Rheumatica (PMR) | Last Active: Apr 2, 2023 | Replies (51)Comment receiving replies
That amount for Actemra sounds about right. I get an infusion every month and they charge an additional $1600 to administer it. I have been able to get totally off prednisone that I have been on for more than four years. I feel so much better. My doctor was able to get it totally paid for by Medicare and my supplement by saying I might also have seronegative RA. She is unsure about that though. However it got the insurances to pay. It is a wonder drug for me! I hope you can find a way to get it paid for.
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I was wondering if seronegative RA would qualify someone to be treated with Actemra the same as a person who is seropositive for RA. Actemra is approved for RA and I don't think the FDA distinguishes between being seronegative or seropositive..
My rheumatologist says I have seronegative "inflammatory arthritis" so I wonder where that fits in. My type of inflammatory arthritis is called reactive arthritis (ReA).
I remember my staff rheumatologist was supervising a new resident doctor. The resident doctor reported to my staff rhematologist that I was a patient with RA. My staff rheumatologist jumped all over that and asked, "Who said it was RA?" in a rather emphatic way? It could have been me but I knew better. I tried to help the resident out and told my staff rheumatologist I had reactive arthritis or ReA!
Just lately, I noticed on my prescription for Actemra that it says to do one injection weekly for Reactive Arthritis when it has always said PMR in the past. I'm not too worried about what diagnosis Actemra is prescribed for so long as it works.
I was worried when I had to stop Actemra when supplies were low because of it being used for Covid patients. When supplies were improved I asked if Actemra needed to be re-approved. by the approval committee since it was stopped for about 6 months. I was told not to worry because the approval would never be undone. The only reason Actemra would be stopped was in the event of a side effect, infection, or if Actemra stopped working. My rheumatologist wasn't inclined to stop Actemra anytime soon.
P.S. How do you like doing monthly infusions. I have done both ways ... by injections first then I switched to a monthly infusion. Now I'm back using the injections again because they accidentally sent me a supply of injections when I was doing infusions. I offered to use up the injections so they would "not" be wasted. My rheumatologist said I could do either the injections or an infusion. I don't know what I will do when I run out of injections. I liked the infusions better.