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Has anyone heard of Actemra?

Posted , 7 users are following.

paula63201
paula63201

I have never heard of this before, but found it posted on FB. Actemra (tocilizumab)‎, is a drug currently in use for RA patients. The infusion has been used in a few case studies and shows promise to be able to wean off Prednisone in 6 months versus 2-3 years. I think the test subjects have had or have GCA. Is this like Methotrexate?

Just curious.

1 like, 14 replies

14 Replies

  • Angela345
    Angela345 paula63201

    Posted

    Yes I have heard about it. It's a 'biologic' drug used to treat rheumatoid arthritis, whereas methotrexate is a DMARD (disease modifying anti rheumatic drug). They both reduce inflammation in the body but they both work in different ways to each other. Any new treatment that's found to help has to be a good thing. It's hard to get onto biological though as your disease has to meet certain criteria in order to be prescribed. Angela
  • EileenH
    EileenH paula63201

    Posted

    A trial using tocilizumab in GCA is in the pipeline in the UK.

    Follow this link

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

    and then click on the first link to the northeast of England support site. On the lefthand side there is a list of topics covered on the site and the third one is Research. Clicking on that then takes you to a page with information about ongoing research projects where there is a description of the study in lay language.

     

    • lodgerUK_NE
      lodgerUK_NE EileenH

      Posted

      In the last Newsletter  (2014) (the link is in Eileen's post)  there is an article by a lady who is currently taking part in the research trial. Gladys is a member of our Support Group.

      At the meeting (last Monday this month) the Consultant running the trial is the Guest Speaker.

    • paula63201
      paula63201 EileenH

      Posted

      Thank you. There is a trial being done in Texas, also.
    • lodgerUK_NE
      lodgerUK_NE paula63201

      Posted

      The trial is worldwide in a limited number of Hospitals.

      Patients who are willing can register with their GP or Consultant to take part in any research trials. 

    • jean39702
      jean39702 lodgerUK_NE

      Posted

      I would be pleased and willing to consider participating in any research trials relating to PMR.  However, I doubt my practitioner in small town northern Canada would have any knowledge about the how to's of registering.  If it is a possibility for me in this corner of the world, would you have any information, or link, in terms of the how to's that I could review and pass on?
    • EileenH
      EileenH jean39702

      Posted

      Trials do usually require you to be within reasonably easy reach of a named centre participating in the trial because you have to be monitored according to a strict protocol. Some parts can be done via a GP but other bits must be done by specific people for consistency. Often, too, the recruitment is of newly diagnosed patients or within a specific time frame because certain criteria must be fulfilled.

      Shame, but there it is.

  • sherrie1959
    sherrie1959 paula63201

    Posted

    I have been on Actemra injections twice monthly for 1 1/2 years. It has been helping me out greatly. But big bump in road is the mouth sores which are on my tongue and now my throat. Skipped injection for 3 weeks just did an injection and they are very bad now. Tried steroid dental paste and lidicaine for pain. I really hate to quit it since it was the best so far. Will see what my doctor says this week.
    • mark9992
      mark9992 sherrie1959

      Posted

      I know this is an old discussion, but I'm new to the forum.  What I'm seeing online is that there have been roughly 4 studies, and all went into 100 per cent remission except for those who didn't tolerate the infusions or otherwise had infections.  This is the first I've heard of such a long term infustion series.  Where are you now in the treatment cycle?

    • EileenH
      EileenH mark9992

      Posted

      What you have probably seen are very small-scale pilot studeis. The large-scale phase 3 Giacta clinical trial has finished and we are waiting for the results to be published. The US company has already submitted documentation for approval to the FDA on the basis of their results as they think they are good enough.

      There has just been a consultation document from the NHS about the use of tocilizumab in GCA - and it has been rejected. Why they did it just before the trial results were to be published heaven knows!

      It is being used in the US when patients can get funded - it's still off-label use so insurers can refuse to cover the considerable cost of $20,000/year or so. It is already used for RA so there is quite a bit of experience with it.

    • EileenH
      EileenH

      Posted

      PS - sherrie is on Actrema for RA, if you want to know more about the drug itself the RA forum is the place to ask. You won't hear much about it being used for GCA on this forum - I think there are only 2 people who are in the USA.

    • mark9992
      mark9992 EileenH

      Posted

      Thanks for that Eileen.  Yes,  the studies I read were very small.  There was one phase two study slightly larger...all very positive for PMR only which is what I have...no GCA.  I'm in the U.S.,  Naples, Florida actually.

      That's interesting if you actually can get it used that way in the USA.  Doctors here are scared to death to do anything unless there's specific gov't approval, but I'm going to talk to my Rheumatologists Nurse Practitioner about it next week.  FYI,  in most or all of the studies done it seems they only want people with, "intractable PMR"  wouldn't you fall into that category?  It does seem as though the track record for the stuff is pretty good however small the sampling.

    • EileenH
      EileenH mark9992

      Posted

      I'm doubtful whether you'd get it funded for PMR except in a study. Yes, I suppose having had it for 12 years might well count as intractable - but I don't live in the USA and I doubt there will be trials for it here in Italy! And in trials you have to live near the base for the monitoring that has to be done. Ah well...

    • mark9992
      mark9992 EileenH

      Posted

      I'll pay blood cash if I can get a shot at it.  My understanding is that 6 infusions should do it, at least that seems to be what they do in the tests.  I just doubt the doctor will stick his neck out.

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