Starting RoActemra trial next month, hurrah! Any info?

sulkycat
sulkycat Member Posts: 71
edited 2. Oct 2012, 17:01 in Living with Arthritis archive
Have been MIA for ages, mostly health related (pain, exhaustion, severe depression).

Had a marathon five hour hospital session last week, including bringing in the top gun (my consultant The Professor, who is simply superb) who said enough was enough and to get me started on a new RoActemra trial asap.

He has put me back on meths tablets, as a pre-requisite of the trial for four weeks, and I have an appointment for the end of October to sort the paperwork, Xrays, TB / hep checks etc, and possibly the first infusion. Hs also given me stronger anti-emetics to try and help me with the meths.

I am delighted to finally be getting something more advanced to try, as I have had awful reactions to everything so far with minimal success. My RA levels are always high, pain is pretty dire etc. Life, to put it frankly, has been pretty sh1te.

I would be hugely grateful for any / all info on the new drug, especially the actual process and how others have felt having the infusion. Thank you in advance.

Comments

  • arfaitis
    arfaitis Member Posts: 155
    edited 30. Nov -1, 00:00
    Very difficult for any of us to give any advice on this one it is fairly new.
    I have looked it up in the web, and it appears it is given the same as Rituximab by infusion, but it is often given with MTX as well, but it can be taken on it's own, this will depend on what your rheumy thinks.
    You will have to have regular blood tests to check how it is working.
    Good luck with it, hope you find you are pain free soon.

    Arfa
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    I looked it up. It's also called tocilizumab and I remember a thread on it. I'll try to find it and bump it up for you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • sulkycat
    sulkycat Member Posts: 71
    edited 30. Nov -1, 00:00
    Great screen name arfa ;-)

    This is a double blind trial - after a few weeks some will have the meths gradually reduced until they are not taking any at all. The aim of the trial is to help prove that RoActemra works WITHOUT anything else along side it (which of course would make it superb for those like me who cannot tolerate meths very well).

    At the moment it all seems a bit too good to be true, I won't believe I am having it until the needle is in my little chubby arm.
  • arfaitis
    arfaitis Member Posts: 155
    edited 30. Nov -1, 00:00
    Out of curiosity Sulkycat, I am from West Yorks, and I live near Batley.

    Arfa
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    Forgive my ignorance but how does a double blind trial work? Are you aware of what drugs you are being given?
  • arfaitis
    arfaitis Member Posts: 155
    edited 30. Nov -1, 00:00
    salamander wrote:
    Forgive my ignorance but how does a double blind trial work? Are you aware of what drugs you are being given?

    The answer to that is no, I was offered a trial drug once and half get a placebo, but it would be perfectly obvious if you still suffer your pains.

    Arfa

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