Tocilizumab trial

Hi, I was diagnosed 21 years ago, I'm 42 now. Last flare started around June and still struggling. I am on week 19 of the trial with the drug above together with hydroxy chloroquine. There has been improvement but still very stiff and painful to move. Still off work. Also struggling with isolation since I've always been very active and now just stay home alone all the time. Wondering whether anyone has tried this drug before as I'm not sure this is the best drug for me. Thanks.

5 Replies

  • I have been on the same drugs as you since June last year. I still have stiffness in my joints in the morning also still in pain, which wakes me up several times so that I have forgotten what a good nights sleep is. When I have my bloods done though my crp and Esr are very low so the doctor said that I am in remission and the pain is because of the joint damage that has been done ! Now being sent to ot for joint protection lessons, I think I needed these when I was first diagnosed before any joint damage was done.

  • Hi ozzy, thanks for your reply I really felt like I was special and turns out there's others like me :)

    I'm seeing the consultant next week and will have a word about these joint protection lessons, I think that might be a good idea.

  • Hi, I was diagnosed about 6 years ago, and was put onto Tocilizumab January last year after several other drugs had failed to help. I had 4-weekly infusions at the hospital for a year, and found I improved gradually over the first few months. My day-time energy increased, and my joints were less painful, although still stiff in the mornings and sore in the evenings. I still take etoricoxib (arthrotec) daily, as well as painkillers (tramacet), due to joint damage and/or osteo in some joints, and back pain. In January this year, I was switched to weekly home self-administered injections of toci, which is supposed to be the same. After 10 weeks on these, I'm not sure they're working as well, as I'm having noticeably more pain in my hands, feet & knees. I do find it helps if I can get out for a short walk every day, though, about 30 mins. I think it helps, if you can manage it, as I do feel worse if I don't go out at all. Have you let your doctor know how you feel?

  • Hi and thanks for your reply. I am on the home self-administered ones too and they say the results will be clearer after 6 months, I'm on week 19 now so I'll wait. I'm seeing them next week. As for the exercise that's what frustrates me the most. I climbed a mountain only last June and it kills me not being able to keep fit. I do try to walk but I really struggle so I basically walk 5to10 min and have to stop. I'm on antidepressants and I do try to keep positive but I have really bad days here on my own. Thanks.

  • Hi i am on Tocilizumab have been for 2 years it has helped as i could not even lift my arms to scratch my nose but it is the best 1 so far and i have been threw many but for me i thought i would be brand new but that never happened so i live in hope

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