Actemra to lower prednisone for reuccuring GCA
Posted , 8 users are following.
I've had GCA five tmes since June 2009 (as well as PMR twice and ongoing PBC). My rheumatologist puts me on very slowly tapering 60 mg.prednisone daily as well as 1 ml injection once a week of methotrexate. My pesent flare required 80 mg.pred.- my adrenals are no longer producing corticosteroid. At a second opinion at Mayo Clinic the doctor wants my prednisone as low as possible (?) since I'm having so many side effects - weakening bones (made worse by scoliosis and stenosis) and muscles, fatigue, depression, catarats, etc. He's putting me on Actemra infusions by Genentech which is FDA approved for rheumatoid arthritis not GCA. This means it is not covered by Medicare, our AARP Supplement or the coupons Genentech supplies for RA but not for me because it's an off label use. My out of pocket cost will be approx. $17,000 per year! Yikes! My husband and I are middle class retired seniors. I just turned 70. Does anyone have any experience with Actemra, positive or negative, Genentech or ideas for financial support?
2 likes, 5 replies
EileenH JanSP
Posted
I have no idea whether you need ongoing Actrema in the same way as you do for RA - a pilot study with 10 patients on Actrema for PMR had patients in remission within 6 months after (I think) 3 or 4 treatments. If someone told me that that was likely I might consider funding it - but it is actually a situation I will never be faced with as I'm in Europe. State funded medical services may have their downsides - funding our medication isn't usually one.
Unfortunately for you, few of us on the site can offer suggestions for funding, the vast majority of us are in the UK where such a problem doesn't arise. I'm sure the others your side of the pond will pitch in if they have any ideas.
Dave-California JanSP
Posted
Like you I'm always concerned about drug prices in the US - mine fluctuate up and down depending on where I'm at with my deductible.
Regarding Actemra, the only thing I know is that you can check out their website and they have a section that deals with Patient Financial Assistance for that drug.
Good luck, Dave
JanSP Dave-California
Posted
Anhaga JanSP
Posted
susan29426 JanSP
Posted