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Date: 26.09.2012
From: rhona

Subject: TOCILIZUMAB

Hi, Is anyone on Tocilizumab? I have been told today i will start this drug soon and wondered if anyone else is on it and what they think of it, I would appreciate any replies... good or bad. Thanks.
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Date: 26.09.2012
From: Two hip replacements and still going!

Subject: Re: TOCILIZUMAB

I just read about it on the arthritis research website, its used when people can't have methotrexate or other anti-tnf treatments. Apparently they've just made it available on the nhs in Scotland.
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Date: 26.09.2012
From: rhona

Subject: Re: TOCILIZUMAB

Hi, I have already had enbrel and rituximab without great improvement so this will be my 3rd biologic. It can be given with or without mtx so they will probably want me to continue with it. I believe they have been using it in Scotland for a couple if years but not sure if it's been available in England as long.
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Date: 02.10.2012
From: chrssy

Subject: Re: TOCILIZUMAB

Hi rhona ive not posted for a while im on toc, im on my 15th infusion next tues,doing ok, apart from getting repeated abcess's,still get flare's if i do to much,but other than that doing great, good luck hope it work's for you.x
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Date: 02.10.2012
From: rhona

Subject: Re: TOCILIZUMAB

Thanks Chrissy, i am always a bit worried when trying a new biologic so i appreciate your reply. I think it may be December before i get it as i had rituximab in june and told it's not good to have them too close together.
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Date: 03.10.2012
From: Deborah

Subject: Re: TOCILIZUMAB

Hi Rhona,
Sorry to hear that you have to start you on another bio-logic.
It is scary and we can't help worrying about it.
I have started on mine last week for the first time did not realise just how much they affect your immune system and how you have to watch that you don't get cold's/flu's etc.
But at least you get really good medical attention while being on them and if they help us even a bit it make's it all worth while. All the best Deborah.
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Date: 03.10.2012
From: rhona

Subject: Re: TOCILIZUMAB

Hi Deborah, Glad that you got it, if i remember correctly it was the humira that you started. How do you find injecting it? I didn't mind injecting the enbrel too much, just i had no effect from it and luckily i didn't get any infections at all while on it. I really hope it helps you, it makes such a difference when you can move without extreme pain.

I got a steroid injection last week and it really has made a difference this time unless the rituximab is at last working, they do say it can take 3 months but that was back in june i got it. I even managed to take my dog a walk this afternoon, just a short walk though, i was lucky i got back before the rain came on.

Take care and hope you get a huge benefit from it. xx
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Date: 12.11.2012
From: julie byford

Subject: Re: TOCILIZUMAB

Hi
I have had RA for nearly 2 years now and they started me on methotrexate tablets which had no effect at all so changed them to injections which still had no effect so gave me sulfasalazine as well to take as they said the 2 drugs work well together but made no difference to me and recently had a really bad flare up and was given a steriod injection which this also made no difference at all so the doctor has now asked me if i would like to go on the trial for tocilizmab in which i have an appointment this thursday to talk about. I logged on to this forum to see if i could find out about what people think about the drug but have noticed that there is hardly any info, is it because the drug is new? I don't want to google the drug because quiet honestly i don't want to know all the really bad side effects that they list.
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Date: 12.11.2012
From: rhona

Subject: Re: TOCILIZUMAB

Hi Julie, I believe it's one of the newer ones. when i was getting my rituximab infusion there was a girl beside me getting tocilizumab and she had been getting it for 2 years and said it had made a big difference to her. It is given every month in hospital. I am in Scotland but i don't think it's been used as long in England. Remember that all drugs have side effects and some people do fine on biologics without any side effects. Let us know how you get on.
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