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Has anyone had Tocilizumab prescribed

alanthemancalanthemanc Posts: 512
edited 30. Mar 2013, 09:21 in Living with Arthritis archive
My Specialist has proposed me going on Tocilizumab infusions. I just wondered if anyone is on them. I think I'll still be on Methotrexate as well, he's waiting a week or so, doing tests on my bloods. Thanks.


  • barbara12barbara12 Posts: 20,945 ✭✭
    edited 30. Nov -1, 00:00
    Hello Alan
    I think there are a few on here on the infusions, so hopefully they will be along very soon...must say its very quiet on here...why dont you search Tocilizumab at the top of the forum..the search button next to members...good luck..and I do wish you well with it...x
  • scatteredscattered Posts: 326
    edited 30. Nov -1, 00:00
    I've just started tocilizumab, due my second infusion in a week and a bit. I found the actual infusion fine, but the medication made me feel sick for about a week after. I'll have to see how the next one affects me.

    It's a monthly infusion, that lasts an hour. It can work for some people within a couple of days, or it can take up to 3 months to kick in. I have yet to feel any change, but I remain hopeful.

    In a recent study (It's in the 'arthritis news' section of Arthritis UK's website) tocilizumab was found to be more effective than anti-TNFs at controlling RA. It's still quite a new drug so hopefully more positive research will come.

    I'm also on MTX and hydroxychloroquine. It is thought tocilizumab works better in conjunction with MTX.

    Good luck.
  • alanthemancalanthemanc Posts: 512
    edited 30. Nov -1, 00:00
    Scattered / Barbara
    Thanks for the info, lets hope it works because I'm not too impressed with Methotrexate on it's own, I just can't seem to get a reaction from it.
    I've had all the mab infusions, and not had a lot of success with them, but lets hope this works, thanks again. Alanthemanc
  • premierscfc04premierscfc04 Posts: 57
    edited 30. Nov -1, 00:00
    I had my 3rd infusion a week ago and I got no noticeable benefit from the 1st infusion. But the 2nd and 3rd helped for just over a week and the pain & tiredness kicked back in.

    As its still early days I'm sure it just needs to build up in my system and the only side effect I've had was itching after the 2nd infusion which lasted for about 5 days. The itching was prevented on.the 3rd by using a piriton injection prior to the Tox.

    I've been on all of the flavours of Anti-TNF the last of which worked for 9 years, so I'll be pleased if this is successful.

    Hope it works for you.. Prem
  • janie68janie68 Posts: 1,186
    edited 30. Nov -1, 00:00

    I have just had to stop the Toc infusion due to nasty side effects. I really did suffer, but it was effective with my RA, my bloods were very good inflmmation wise. I found it worked straight away. The side effects were too much which is a real shame as it was the best one so far for me.

    That may not be the case for you, I hope it does work. I'm only on mtx and sulpha now and really struggling, waiting for the go ahead for a new treatment takes forever especially when you're in pain. Lets hope you get started soon.

    Good luck Janie
  • alanthemancalanthemanc Posts: 512
    edited 30. Nov -1, 00:00
    I will watch out for any side effects, I had a poor reaction to Sulphasalazine 10 years ago, and I'm still taking antibiotics 10 years later because of it. Good luck for the future . Alanthemanc
  • KuamyKuamy Posts: 1
    edited 30. Nov -1, 00:00
    Hi everyone,

    i´m from Spain, and i´m two years on tocilizumab. I´ve 35 years old woman.

    I have had two side effects: it has raised the good cholesterol nevel, and the blood pressure.
    The 95% of the patients have no problems with it.
    Under the control of the doctor, I am satisfied and recommend it in spite of the side effects.

    My question is ¿someone has become pregnant while tocilizumab...?

    Sorry for my Englihs level....
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