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Anyone have experience with RoActemra?

Posted , 3 users are following.

janet08828
janet08828

Hello one and all.

Long time since I was last on the site. My GCA is still hanging in there unfortunately - have been on pred. for 3 years now, my dose at the moment is 7,5 mg I also inject Mtx once a week - haven't had much success in getting my dose down and now my liver count isn't looking so good - I have been started on this biological treatment RoActemra a couple of weeks ago. Also an injection once a week. I had hoped that it would be instead of something, but at the moment it is as well as the other meds.

Is there anyone who can share experiences with this drug? It is supposed to be kinder to the body than pred. and mtx.

Thanks. Janet

0 likes, 6 replies

6 Replies

  • EileenH
    EileenH janet08828

    Posted

    There has been a clinical trial using toxilizumab (brand is RoActemra) in GCA but the people who were on it probably won't know as it was a double-blind trial. It will still have to be used alongside pred at first as there is not yet proof it can deal with GCA alone and if they stopped the pred and it didn't then your sight would be at risk. If it works then you should be able to reduce the pred quickly.

    To be honest - to be at 7.5mg after 3 years isn't bad as things go. I'm on 5mg after over 6 years for PMR that is probably GCA. I know several ladies who needed 5 years or more to get off pred - but they did. MTX - probably really doesn't achieve much other than upsetting your liver as you are seeing.

    Kinder to the body? Different and you hope to be on it for far less time so kinder in that sense. But it has potential side effects too. 

    The best place to ask about what it is like is on a rheumatoid arthritis forum - it has been approved for us there for a long time. Only a very few US patients I know are on it for GCA - there won't be any in the UK yet.

    • janet08828
      janet08828 EileenH

      Posted

      Thanks Eileen - good to hear your wise and calming words after a long break from the site.

      Just having a dose of "what now" feelings - I am not complaining (much!) just feeling slightly fed up with this illness - keep thinking that I have got it beat and can see the light at the end of the tunnel, until my routine blood test tells a different story .. hey ho ... I will let you know how I get on with this new drug.

    • EileenH
      EileenH janet08828

      Posted

      The rumours we've heard about the trial seem to be pointing to it having been successful - but the results haven't been reported so it is supposition on our part, or anyone else's if it comes to that! I know a few US doctors like to use it - but the funding there is a bit different from the UK! 

      I have to say, if I were you I'd be asking why they wanted me to continue with the MTX if it hasn't done much this far.

      Looking forward to hearing your experiences.

    • janet08828
      janet08828 EileenH

      Posted

      I agree especially since it seems to be affecting my liver.

      I have a good rheumatologist, he takes time and always asks whether I have any questions and I will definitely be bringing the subject of MTX up next month.

      It seems to be a bit of the frying pan and fire option somehow, harming a perfectly good liver to "cure" something else?

      I wonder if a liver recovers?

      I also wonder whether an immune system that has been totally "turned off" goes back to it's original state or whether it is back to square one - as in a new born type situation ...

      I think I had better turn in and save the questions for the doc.!

    • EileenH
      EileenH janet08828

      Posted

      Yes - livers are very resilient, once you take away the thing doing the damage it usually regenerates. A liver transplant doesn't have to be an entire liver, it will grow more providing there is enough, over about 25%.

      The article "Liver regeneration" on Wiki is quite good and most of it is fairly understandable I think (I can't really tell as it is simple for me - don't know your educational background, a bit of science would help).

      I don't know about an immune system being totally turned off - but there was some work published a couple of years ago which suggests that fasting may trigger stem cells to move from a dormant state to self-renewal and could possibly "reset" it in autoimmune disease. In bone marrow transplants though they destroy the recipient's stem cells with chem/radiotherapy so they then have to provide new ones or they can't develop an immune response.

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