anyone on tocilizumab (roactemera)

Dazztee
Dazztee Member Posts: 17
edited 22. Nov 2012, 08:00 in Living with Arthritis archive
im gonna be starting my first monthly infusions soon and wondered if anyones been doin alright with it, i have very active RA and cant take dmards because of my liver ,

Comments

  • frogmorton
    frogmorton Member Posts: 29,791
    edited 30. Nov -1, 00:00
    Hi Daz

    Just spotted this post and as I have no personal experience I have 'bumped up' another thread on the subject for you

    Some of it ought to make you feel positive.

    Love and luck

    Toni xx
  • lulubell69
    lulubell69 Member Posts: 110
    edited 30. Nov -1, 00:00
    Hi
    ivehad four monthly treatments of tocil.... For ra but unfortunately they have given me no relief. Im also reducing my steroids now down to 7mg but i am suffering in all my joints. However dont be disheartened it works for some but not others.
    Take care
    les
  • Dottywot
    Dottywot Member Posts: 1
    edited 30. Nov -1, 00:00
    Hello,

    I have had 3 infusions so far and I call it my wonder drug :)

    I have had severe RA for 8 years now with a Das score always about 6/7. My esr usually ran around 70/80 often higher and I was in constant pain.

    I started toc and yesterday my re score showed I was in remission with an esr at 2.

    The only thing I tend to suffer with now is mouth ulcers but my dentist has prescribed something for that.

    Good luck with it, I have tried so many other things and toc is the only thing that has ever worked!
  • bevman
    bevman Member Posts: 107
    edited 30. Nov -1, 00:00
    Hi
    i have been on tocilizumab i have just had my 6th infusion i have been on rituxamab and embrel both have failed so was really pleased when my rumy told me i could try tocilizumab and i can only say for me it has been like a miracle cure i cannot believe the difference .
    I usually go and have my bloods done and blood pressure and weight on the monday then have my infusion on a tuesday it takes about two hours but just lately it has been a bit longer.
    The only down side is that i have been having a few head aches and at the beginning i felt a bit sick but this is nothing to my RA and worth putting up with i really do hope it works for you like it has for me.
    Laurence
  • Dazztee
    Dazztee Member Posts: 17
    edited 30. Nov -1, 00:00
    hi thank you both for your replys , im still waiting for them to phone me, i had my tb tests and hep tests prior so just gotta wait for them to give it, course ive been waiting for 8mnths for treatment now, so getting impatient, all ive had for most of this year is steroids and painkillers, but at least somethings starting to happen now ive been councelled for tocilizumab so im looking forward to it
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