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ACTEMRA ( tocilizumab) Questions

Posted , 6 users are following.

jo66120
jo66120

Hi all, my doctor is going to put me on Actemra. I really do need some help about how this medicine is going to react. Has anybody suffered side effects and does this drug work.  Please let me know how it’s working for people taking it or not. This drug seems to have quite a lot of side effects and it kinda scares me.  Thanks

1 like, 6 replies

6 Replies

  • elspeth97587
    elspeth97587 jo66120

    Posted

    Hi jo66120,

    I was taking Roactemra for about 18 months with no side effects. I also take sc Methotrexate 25mg every week alongside. The reason I was taken off Roactemra was that it stopped working. I don't know what else you have been prescribed over how long a period but I feel that when I started this drug the pain and inflammation had got so bad the side effects were the least of my worries.

    My RA has been difficult to control and I have been prescribed many different injections and am now having infusions every month which, thank goodness, are working.

    Whatever you decide I hope you manage to get some relief for your pain and inflammation soon.

    Sending you hugs, Elspeth xxx

  • gurpreet54807
    gurpreet54807 jo66120

    Posted

    Hi I’ve been on it since Dec 17 and at first no real

    Improvement or side effects.. been taking it with prednisone steriods..  now I’m able to move with slight stiffness in hands and wrists so not as scary as it seems

    Good luck 

  • treezsh
    treezsh jo66120

    Posted

    Hi Jo, I took it for 2 years and did very well on it... just stopped being effective like so many others   I am now on Orencia, abatacept, and what do you know after 2 years it too has ceased to be effective for me.... just had a steriod injection which was heaven for a few weeks at least!  Hoping to change now to the JAKS, tablet form which must be an improvement for subcutaneous injections or infusions.  A bit more of a normal life with flexibility would be good   Hope it works for you!

    As for side effects.... they all seem to have their own set of nasty side effecrts.  As I recall Toc was mainly hypercholesteraemia, so if you believe in statins I guess you just take them to counteract it.  I only hope that as I become sensitised to these drugs and they stop working there is a new one on the market to try!!!

     

    • Guest
      Guest treezsh

      Posted

      Hi Treezsh, I am on Zeljanx XR, the 11 mg pill you take once a day. I've been on it for a year now and I love it!! No flares, not much pain. I hope it works good for you. The best thing about it is NOT taking shots!!! WHOOOOHOOOO!!!

    • treezsh
      treezsh Guest

      Posted

      Hi River, oh that is such good news... I am already getting excited about not putting those needles into myself every week and feeling like rubbish for 36 hrs or more... fatigue!   One thing though I cannot tolerate methotrexate... do you have to take it with your Zeljanx XR?   Can wait to have a tablet like "normal" folk!!!  Thanks for your encouragement... I was almost contemplating having steriods as often as possible as the only way I have felt normal for a long time.....!  

  • mary76396
    mary76396 jo66120

    Posted

    Hi Jo, I’ve been on Actemra and had no side effects related to RA, my pain levels were better and I was happy with it until I started having stomach troubles from Diverticulitis. Apparently if you have diverticulitis the Actemra can make it worse. I’m now on Orencia injections and Methotrexate injections.
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