Is anyone taking tocilizimab and how are you getting on ? I’m waiting to start course but am in agony at moment 😩


  • Mike1
    Mike1 Member Posts: 1,992

    I have OA and am on a different med regime but here is the Versus Arthritis bit about Tocilizimab that may be of use to you.


  • I got in trouble with a pharma drug in the 80's that put me in the ER with stomach ulcer. That was my wake up call.

    I use therapies of more natural pain relievers and the hardest stuff I take is 1 ibuprofen. 1 extra strength tylenol every 6 hrs on a stomach that has food in it.

    Did opioids after hip replacement and in recent years had a staph infection in arthritic knee and could not WAIT to get off them.....

  • PS: And I live with so much damage from the hip replacement, if I could do things over, I've often thought.

  • Lilymary
    Lilymary Member Posts: 1,503

    @jaminhealth , if you don’t mind me asking, what damage did your hip replacement cause?

  • omg, I've been thinking about doing a separate post on my experience...but I'll mention it here for now.

    Had Anterior approach and was comfortable with the surgeon and the reports I got about him but knew NO ONE personally who had a Hip replacement...I was 72 and in a lot of groin pain....so after dragging my feet for 6 months after I had his name, I went to see him. The right groin area was a mass of what I call bone spurs....jagged points all along the right groin, left groin was smooth.

    So I did the job.. fearful yes, but was willing and wanting to less LESS PAIN. So for first 5 months, I was doing going post op and then it all went downhill for me. First surgery, I had no clue.

    Femoral nerve was damaged so my right thigh is full of neuropathy, and NUMB.

    Right Leg turned out shorter and I had no clue for a year or so, a podiatrist found that when I went to a foot treatment,

    Foot/ankle is worse from shorter leg.

    IT Band down right side is dead and sore. Had work down on that to no avail.

    Back OA is worse.

    I've been on many joint groups and it's amazing the good and bad reports from around the world.

    The only positive thing I have from it, no groin pain.

    Would I do it again, if there were in my picture, I'd do the posterior, the old tried and true and probably overall better approach. But I went with the newer one, and years later have read many surgeons are not doing them due to the above...

    BTW: I like your name LilyMary...

  • stickywicket
    stickywicket Member Posts: 26,619

    If you put 'tocilizumab' into the search engine on the left some previos threads will come up. I've never taken it as I do well on meth and hydroxy but, with all DMARDS and biologics it seems to be 'horses for courses' and 'suck it and see. I hope it works really well for you.

  • Kesa27
    Kesa27 Member Posts: 7

    Thanks 👍

  • Lilymary
    Lilymary Member Posts: 1,503

    Thanks @jaminhealth, that's really helpful. I'm sorry it opened such a can of worms for you.

    My name is in part derived from a little rescue cat I had who had spent two years in an awful rescue centre, and who ended up with what felt like the full set of medical conditions, and underwent numerous surgeries, drug treatments etc. She was on 8 pills a day by the end, but despite being a slightly crabby and creaky little thing, she was so stoic throughout it all I've learnt a lot from her and am happy to honour her memory in the context of my own trials.

  • Kesa27
    Kesa27 Member Posts: 7

    hi Lilly Mary

    ive just seen my consultant today and will start tocilizimab in 2 weeks alongside methotrexate and steroids. Arthritis very much active at the moment so in a lot of pain in all joints . I’ll let you know in about a month if it works or not .


  • frogmorton
    frogmorton Member Posts: 27,386

    Best of luck Kesa27 let's hope tocilizimab is the medication for you and things start to improve for you once you are on it.

    Do let us know how you get on

    Best of luck

  • Kesa27
    Kesa27 Member Posts: 7

    Thanks , I certainly will keep you posted

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