clinical trial?

bighair
bighair Member Posts: 14
edited 2. Nov 2011, 15:34 in Living with Arthritis archive
after 5 months of no treatment because of deranged liver function causing the most horrendous flare-up of my life, I now have two options. Go on anti-tnf (probably adalimumab) or take part in a clinical trial with a 50/50 chance of either getting an anti-tnf versus a rituximab infusion. Scary part is the rituximab can possibly cause a fatal brain virus (so far 6 out of 200,000 users so pretty low), but it might be the more effective treatment.
Also follow-up on the trial is consisitant. Anyone on rituximab who can let me know how they are doing?
I got a steroid injection today so praying it will calm things down in next 24 hours - canny wait :grin:

Lorna

Comments

  • tillytop
    tillytop Member Posts: 3,460
    edited 2. Nov 2011, 11:51
    Hello Lorna.

    So sorry you have been having such a horrendous time of it but pleased you now have some potential options.

    I had my first two Rituximab infusions nearly six months ago and I am of the opinion that it is helping alot. Rheumatologist isn't so sure based on blood results and DAS score but all I know is that, pre-Rituximab I was strugggling on 20mg meth and 20 mg pred and now I don't take meth and only 5mg pred.

    In terms of comparison with Humira (Adalimumab) I have had that too and it was certainly very effective in controlling my RA. If you are trying to decide between the two though, you need to bear in mind that Rituximab is VERY slow acting and it can be up to a year before you know whether or not it is going to work for you.

    Good luck with whatever you decide.

    Tilly
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Sorry can't help, just wanted to wish you well..x
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    I can't help either, bighair, but I do wish you well in whatever choice you make. I hope it will work for you with no repercussions.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • CJHunter
    CJHunter Member Posts: 1,038
    edited 30. Nov -1, 00:00
    Hi , I cant help either but wish you all the best with whatever you decide.
    Im sure you will do whats best for you.

    Take care
    Clare xxeyeore-1.jpg
  • bighair
    bighair Member Posts: 14
    edited 30. Nov -1, 00:00
    Hi Tilly,
    Your reply was very helpful and I appreciate the words of support from the other respondants too. It is encouraging to know that the Rituximab infusions are working for you. Do you mind me asking why you had to stop the Humira?

    Thank you
    Lorna
  • frogmorton
    frogmorton Member Posts: 29,847
    edited 30. Nov -1, 00:00
    Gosh Lorna

    have no expereince of ant tnf but would like to say l am glad you have some choices (albeit a wee bit scary choices) and hope that the steroid helps you in the meantime.

    If you are up to it l would be very interested to hear how you get on.

    Love

    Toni xx
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi, I don't have your type of RA and so I don't have that problem, sorry. Its a hard decission for you, but the odds of the infection sound very long to me, a non medical person.
    Whatever you decide, I hope that you soon feel the benifit. Is their anyone on the trial you could talk to, or don't they allow that.
    Love Sue xxx
  • mp1952
    mp1952 Member Posts: 425
    edited 30. Nov -1, 00:00
    Hi Lorna

    That's a dilemma!

    I have been on adalimumab since April 2011 and it has been marvellous for me.. I felt a noticeable improvement 2 days after my first injection.

    Marion
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello again Lorna.

    Re the Humira - I stopped it after almost two years because I became allergic to it, which can happen sometimes if your body builds up antibodies to the drug. But once the Humira worked its way out of my system over a few months, I had no lasting ill effects.

    There are quite a few forum members on Humira and, although Rituximab has only started to be used for RA more recently there are some other forum members on it. They tend not to be regular posters though, so may not see your thread.

    Tilly

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