RoActemra/ tocilizumab

Does anyone have an experience of this drug? After 10 months of trying MTX and Sulpha (both of which helped the RA but had side effects that meant I could not continue to take them) I went for my first infusion last week. However, it seems my body doesn't want to like any drugs and I had an allergic reaction. I was very upset at the time but my Rheumy has said we can try again after 4 weeks but they will give me antihistamine and hydrocortisone half an hour before the treatment which will hopefully stop this reaction happening again. I just wanted to know if anyone on here has had a similar experience and if they were ok when they tried again? Guess I just want a little reassurance as I feel I am running out of options and, after two months without any treatment, my hands and feet are really really hurting. Thanks

2 Replies

  • Hi Speersy,

    I can't give you any information regarding Tocilizumab side effects as I am still waiting to start the injections. It depends on the area you live as to whether you can have a choice of infusions or injections of Tocli.

    It has been over 3 weeks since I finished all the tests. That is apart from the TB test and the nurse called to say it failed. Apparently it was the test that failed and not me failing the test, the nurse couldn't give me a reason why but asked me to return to the clinic to have another blood test, that was a week last Monday.

    I can understand how bad you must be feeling without medications. My first medication was the sulpha for about 5 years, and various other meds including MTX which had to stop due to side effects. My last med being Enbrel injections which worked and without side effects. I had to stop those due to other med issues and when I started to have the injections again they didn't work, hence, I am waiting to start the Toci

    injections. I have checked online about the Toci and had feedback on here which has been all positive, some call it the "wonder" drug, I really hope it is.

    Take care, and all the very best, hope you can get your RD under control. S

  • Hi angel-delight

    Thanks for your reply. Seems we are both hoping it is a wonder drug :) Hopefully injections will be introduced in my area later this year but until then it is by infusion. I just hope things go ok next month and things are under control soon. All the best with your injections too x

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