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Tocilizumab....Actemra for PMR ???

Posted , 11 users are following.

Danrower
Danrower

Got a sharp new rheumy who offered a potential option, as I complained about by "old man walk"

Does anyone here have any experience or knowledge about the injectable or infusable drug Tocilizumab, commercially known as Actemra, for treatment of stubborn PMR. I've had PMR for 18 months, tapered to 5 mg pred, now bumping up to 5.5, as I'm having foot swelling and some increased fatigue. Additionaly, I had( before pred) and have marginally sero-negative esr and crp. And no apparent typical rheumatoid joint degradation. 65 yo male, in the USA.  much thanks.

0 likes, 10 replies

10 Replies

  • Chirsy42210
    Chirsy42210 Danrower

    Posted

    I was on humira? Can't remember how to spell it. But it caused awful psoriasis, my dr then recommend Actemra as an infusion once a month so far so good. He started me off several months ago and after the first few he doubled my dose due to my crp and sed rate levels. That being said I have takayasu's arteritis when I singed into this conversation I was on a comment specific to T A from what I've read everybody on here has PMR? I hope this helps
  • lodgerUK_NE
    lodgerUK_NE Danrower

    Posted

    TCZ is licenced in the UK For Rheumatoid Arthritis.

    Currently there are worldwide trials taking place on TCZ, some of the in hospitals in the USA.  These trials are to see if TCZ is ok with GCA (sister of PMR).

    Mayo Clinic will have details of the trial or just use your search engine and type in TCZ trials for GCA. 

  • EileenH
    EileenH Danrower

    Posted

    I'd hardly describe PMR that is responding to a dose of 5.5mg after 18 months as "stubborn"!  PMR comes when it wants and the underlying autoimmune disorder will go into remission when it feels like it. I've had PMR for over 10 years and have got to 4mg pred - and frankly, since tocilizumab is a monoclonal antibody and relatively new, I'd be far happier to remain on 5mg of pred for a few years than introduce that at this stage. It would be a very different matter if one was stuck at 10mg or above but you aren't.

    Follow this link

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    and nearly half way down the first post is a heading PMR-GCA Scotland and a link. Follow that link and on the left, under About the conditions, you will find Research and Clinical Guidelines. Click on that and about 2/3 down that page there is a link to descriptions of the tocilizumab trial, one for medics and one in lay-persons language. The first trial is for GCA, there are mutterings about one for PMR but I don't know if it is being done. Tocilizumab is rather more expensive than pred - so I can't see it being of great interest for PMR (in the UK at least) since it isn't without risks itself and personally I doubt whether low dose pred is worse! 

    I know a few people who found the "old person walk" lasted for some time - I probably had it 3 years ago but I certainly don't now. 

    • lodgerUK_NE
      lodgerUK_NE EileenH

      Posted

      "personally I doubt whether low dose pred is worse!"

      I also would stick with pred.

    • Danrower
      Danrower EileenH

      Posted

      Thanks, Eileen, and all others'  responses. Will do the reading. I think my proper dose now might be higher than 5.5, and compared to others, my case is not stubborn. Except, Eileen, our cases are not too different, sero-negative, I had my first bout 10 years ago.

      This stubborn damn roomate, PMR, moved in and won't leave. He has horribly abusive and unpredictable manners, and makes me take him wherever I go. My first bout lasted 1.5 years, and was planning on a remission about now for my 2nd bout.  

    • EileenH
      EileenH Danrower

      Posted

      The people we know who have had PMR twice have said the second lot bore no resemblance to the first - in any way!
  • linda17563
    linda17563 Danrower

    Posted

    There must be a club for "sharp rheumies" and mine is difinitely in it....she mentioned at my appointment before, going on methotrexate to help lower the steroids...she must have seen my face, and didn`t mention it this time!...but doing a battle with her anyway (zelendronic acid)......best wishes, rather the (old man walk)wink
  • rocketman42
    rocketman42 Danrower

    Posted

    I know I'm renewing an old thread here but I'm curiuos if anyone has had any further experience with Actemra. My Rhuemy, who is at one of the institiutions in the U.S. who conducted the small study, is now suggesting it for me. 

    Hate to replace one poison with another unless there is a very good chance of beating this thing.

    Thanks in advance.

    • jean39702
      jean39702 rocketman42

      Posted

      Scott, this is one thread I would like to see keep going.  I have no experience, but would like to continue to hear from those that do.
    • EileenH
      EileenH jean39702

      Posted

      It will be difficult - more recent joiners won't get notifications of these posts because they aren't "following" the discussion and it is newer people who are more likely to be on tocilizumab/Actemra as it is a new development.  You would be far better starting a new thread and asking for experiences.

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