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PMR, Prednisone

Posted , 7 users are following.

kathy67492
kathy67492

Has anyone tried Actemra for PMR or GCA? I see my Rheumy in a couple of weeks and will ask about it. I am in the USA. I have googled the studies...interesting to get off the prednisone, but not without risk either!

0 likes, 4 replies

4 Replies

  • EileenH
    EileenH kathy67492

    Posted

    The biggest risk is to your bank balance! It isn't approved for PMR and only a very small study has reported for PMR. We are waiting for the results of a large-scale clinical trial for GCA. Because it isn't approved it is difficult to get funding - and it costs about $17,000 a year. A few patients in the uS have had it for GCA and it is funded by the drug company and something else. No-one is on it for PMR that I know of.
  • ptolemy
    ptolemy kathy67492

    Posted

    Tocilizumab (Actemra) is a biologic drug currently approved to treat rheumatoid arthritis, as Eileen says it is currently not approved for PMR or GCA. I have heard the side effects can be pretty bad, on a level with pred, but this may just be supposition.
  • EileenH
    EileenH kathy67492

    Posted

    Forgot to mention - it looks as if it will be required on a semi-permanent basis for GCA, i.e. you may have to continue having it to avoid the pred. It hasn't been around THAT long and there can't be much evidence with regard to long term use - the first clinical studies were in 2001. It is only approved for severe RA etc so that also reduces the number of patients on it.

    Pred on the other hand has been used for about 60 years - the major problems were with the high doses they used at first. In PMR the doses are relatively low and many of the side effects can be managed with lifestyle and dietary changes - which would be my choice before I tried tocilizumab.

  • JanSP
    JanSP kathy67492

    Posted

    Kathy, I've been on Actemra for 4 1/2 months - self injecting every other week. Fortunately the Genentech Foundation is paying for it. I've had GCA for almost seven years and PMR too. For this flare I had to go up to 80mg pred (usually 60 takes care of it) and I'm at 12.5 now along with .8 injectable MTX. I've had many, many pred side effects. The only additional problem since starting the Actemra is vertigo which started two days ago. Don't know if it is because of the pred or Actemra. My mother had vertigo toward the end of her life as well as lupus and two other autoimmunes. Jan
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