Tocilizumab

Hi all, am due to have my first Tocilizumab infusion tomorrow (wednesday), as the Humira injections aren't working anymore and my bone density test was bad so they took me off the steroids which I have taken for 5 years and which have obviously been masking the severity of the disease. Just wondered if anyone has used or is using this drug? Many thanks, x

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  • Hi, I just spoke to a friend today who has RA. After many other drugs that did not help her for one reason or another they put her on this drug. She has been taking it for 1 1/2 years and is doing well on it. She is pleased that it seems to have no obvious side effects for her so far! That is always nice to hear isn't it.

    If my new drug does not work, this drug is plan B for me.

    Hope it does the trick for you.

  • Thank you that's positive isn't it :o) I know we are all different and therefore have different reactions to drugs but it's still nice to hear something positive when it comes to RA, even if it is just for that one person. Thanks for replying.

  • I have my second infusionof this drug on Friday , after trying 3 other meds of this type. and am living in hope that it works even for a while or a bit as none of the others did.

    It says should see effects anything from 2 weeks to couple of months nothing yet lol but hoping. At least it quicker than the other ones like this . and had not side effects that I could say it was this drug, when you have so many niggling pains iches and weird feelings would I know a "side effect"unless a drastic one lol Hope your first infusion goes well and may it work for both of us .xxx

  • nras.org.uk/about_rheumatoi... i dunno if you seen this already tam .. maybe worth a read ..

    good luck

  • Thanks for that Andy. I hadn't seen it so really appreciate you finding it. Hopeful hey. Long for the energy and mobility again to keep up with life and a ten year old son and maybe have some energy to be awake for my other half in the evening when he comes hom from work. Any age is bad but when you're our age, it 'really' sucks eh! God knows how teens cope. Thanks again. Tam

  • thats ok tam ,, im awaiting , to start anti tnf , myself soon ,, being doing alot of browsing lately, when i found that on tocilizumab.. i remembered someone asking about it ..

    why do lots of these drugs end in .. mab .. like ,,golimumab n adalimumab ?? also why such long names .. dont make it easy for us hey ? i cant pronouce half of them :(

    i have a 6 year old daughter ,, so i know what you mean about , energy levels .. it can be so very difficult at times . when all you want to do is rest or nap .. it does really suck ,, your right tam ..

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