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Actemra to lower prednisone for reuccuring GCA

Posted , 8 users are following.

JanSP
JanSP

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

5 Replies

  • EileenH
    EileenH JanSP

    Posted

    Toxcilizumab (Actrema) has just been the subject of a clinical study in GCA and we are waiting for the results to be published. It is very likely this doctor may have been part of the clinical study and saw - as we suspect - that it has turned out to be a "good thing". No official word on that yet though. Even when that is published it will be a while before the FDA approves it I imagine.

    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
    Dave-California JanSP

    Posted

    Hi Jan,

    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
      JanSP Dave-California

      Posted

      Thanks Dave. My husband and I have been checking out Foundations and of course talking to Genentech. My local rheumy (Florida) and Mayo Clinic are helping too. If my problem was RA, Patient Financial Assistance isn't the problem as it is with off label use. Even if I don't get more info on funding the support I'm getting on this site is already helping somewhat with my depression. I'm also learning new things about my GCA and PMR. Eileen has been very helpful.
  • Anhaga
    Anhaga JanSP

    Posted

    I have no idea what options are available to you for helping pay the cost of this drug.  But I do know that there are often foundations and organizations that help to fund people in need of certain medications.  Given your history, which is rather serious, I would think you'd have a good chance of qualifying.  Are there any agencies near you where you could enquire to get you set in the right direction? Can the office of a local politician give you information?  Even a public library may have resources to help you find help.  Good luck!
  • susan29426
    susan29426 JanSP

    Posted

    Two years later....but in the U.S., Medicare just approved Actemra for my GCA. What did you end up doing, Jan, and how are you?

     

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