New Biologic IL-6 blocker RoActemra (generic Tocilizumab)

harryhunt
harryhunt Member Posts: 6
edited 17. Nov 2013, 04:54 in Living with Arthritis archive
After four plus years on max MTX and HCQ with occasional steroids (although no serious side effects) I was gradually going downhill. I therefore gladly accepted the offer to go on a trial of the latest biological drug RoActemra which blocks the IL-6 protein which is heavily involved in inflammation. (MTX will be tapered in one of the groups.) After satisfying the criteria, 2 weeks ago had my 1st infusion at RD&E. Already starting to feel better and stopped pain killers. Swelling, pain and stiffness in joints are easing. Hard to believe it can act this quick. Looking forward to subsequent monthly infusions and hope I can see this through without infections or other complications. Now more hopeful of remission. Early days though.

Comments

  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi Harry
    That's great news long may it continue
    I'm still at the methotrexate and sulphasalazine stage got appointment with Rheumy nurse to see what's the nxt step is and how long before i go down the stronger meds line
    Maria :)
  • kathbee
    kathbee Member Posts: 934
    edited 30. Nov -1, 00:00
    Wow Harry
    Thats music to my ears, I am awaiting my first Tocilizumab treatment after having failed DMARD's and 2 Anti-TNF's.
    Hope you continue to feel this well,

    Really good news.
    Kath
  • harryhunt
    harryhunt Member Posts: 6
    edited 30. Nov -1, 00:00
    Thanks Kathbee and Maria and anyone else who is failing on their current meds. As I understand it this trial is still recruiting and as everything is paid for by Roche, including all meds, travel and food expenses, it's worth making enquiries to see if you meet the criteria. As I travel quite a distance to the centre I'll donate all mine to the hospital and hopefully give something back to the system.
  • harryhunt
    harryhunt Member Posts: 6
    edited 30. Nov -1, 00:00
    Got my blood tests today 2 weeks after 1st Tocilizumab (RoActemra) infusion. NEVER SEEN RESULTS LIKE THIS BEFORE
    Even after steroids. CRP < 1 ESR 2. WOW! Where has the inflammation gone? What is the significance of this I wonder. White blood cell count is down but Doctor not concerned. Amazing! Have forwarded them to rheumatology and will soon learn more. Hope springs eternal.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Good for you, HarryHunt. We do have, or have had others on here taking this med. I hope it works well for you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • harryhunt
    harryhunt Member Posts: 6
    edited 30. Nov -1, 00:00
    Well here I am after Tocilizumab infusion number 5. Still in remission with DAS < 1 CRP < 1 ESR 2. Two more to go and then MTX will be tapered for some of us but we won't know who, nor will the rheumatology team. I still get various muscle aches and pains occasionally but the heat and inflammation seem to be absent and I suspect this is down to doing too much too soon and may not be down to RA. After a couple of days I'm back to normal without the need for NSAIDS. Things are still looking good and no side effects yet. Hope this encourages a few of you for the future
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I have a similar positive result with humira (supported with injected meth). Within two weeks of beginning the humira (in June or July 2009) my CRP and ESR dropped from the mid-50s to figures between 1 and 5. Sometimes they are too small to measure. As to the actual physical benefit, well, that is far harder to measure because the OA has advanced and fibro has joined the party.

    I think the sooner one starts meds the better the possible outcome can be. I went seven years without any meds (thanks to a lack of diagnosis) so for me it's always been too little and far too late. No matter, others are getting what they need sooner which has to be a good thing.

    I wish you well for the future. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    That's just fantastic news, and so encouraging for those waiting for a new treatment. I really hope it continues to serve you well.

    Deb x
  • Toots
    Toots Member Posts: 483
    edited 30. Nov -1, 00:00
    Fantastic news Harry, long may it last! x
    Toots x
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Yes, very good news and inspiring for us who are yet have something work.......Hope it lasts for you :) .
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Harryhunt

    Thank you SO much for posting such a positive story :)

    Long may it continue and I look forward to hearing any updates especially about the possible tapering off of the MTX

    Love

    Toni xxx