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Date: 02.03.2014
From: Eve

Subject: Tocilizumab

Going for a screen to see if I can get on this tomorrow, so hope so as really need something more than the DMARDS and steroids to get my RA in check.

Just wondered if anyone else is or has been on it and has any tips about things I should ask.

Thanks for any help :)
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Date: 02.03.2014
From: Colin W

Subject: Re: Tocilizumab

Eve , gl with the drug , my new consultant mention that they may offer it to myself at some point , he said they will be offering injections instead of fusions

would not recommend any of the anti-tnf drugs myself , so rituximab , Abatacept & Tocilizumab are the only ones I would try
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Date: 03.03.2014
From: Emm

Subject: Re: Tocilizumab

Colin, are the three above mentioned NOT anti-tnf drugs, if not what catergory are they.
Could I try any I wonder, when told cannot have bio's due to chest infections.

Struggling at present on Methatrexate for years but not helping anymore.
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Date: 03.03.2014
From: Colin W

Subject: Re: Tocilizumab

Emm , not sure they would let you try them because of chest infections but you could ask , one thing I would recommend is a zinc supplement , it helps the white cells fight infections & other problems like we get in RA

http://www.nras.org.uk/about_rheumatoid_arthritis/newly_diagnosed/which_drugs_are_used/abatacept_orencia.aspx

http://www.nras.org.uk/about_rheumatoid_arthritis/newly_diagnosed/which_drugs_are_used/what_is_roactemra/_tocilizumab.aspx

http://www.nras.org.uk/about_rheumatoid_arthritis/newly_diagnosed/which_drugs_are_used/rituximabmabthera.aspx
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Date: 03.03.2014
From: bsk

Subject: Re: Tocilizumab

Emm, I had a half dose of Enbrel because of chest infections and it was pretty good. Not perfect but I managed really well on it. I also was put under a chest consultant at the same time so had plenty of people looking after me. Only one infection in 9 months.
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Date: 04.03.2014
From: Eve

Subject: Re: Tocilizumab

Thanks all :) I had my bloods and chest x-ray yesterday so just nee to wait to hear, a few weeks they reckon. I don't want to get my hopes up too much but I'v heard some great things about them.
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Date: 07.01.2015
From: Emily

Subject: Re: Tocilizumab

Did you start tocilizumab? I'm Due for my third infusion. Has anyone suffered side effects from it at all. I want to compare! :)
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Date: 07.01.2015
From: Colin W

Subject: Re: Tocilizumab

hi Emily , I been on Toc since april , dont get any side effects it , but think my consultant is going to change me over to rituximab later this month because it's not worked as well as he would like
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Date: 10.01.2015
From: Emily

Subject: Re: Tocilizumab

Sorry to hear it's not worked too well. Mine isn't working yet either but I've been told it's still too early. I've got a few skin rashes but they don't think it's related and I feel my face looks chubbier on my cheeks but again no idea if this is related (I'm on low dose steroids still reducing so could be this).
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Date: 10.01.2015
From: Julie

Subject: Re: Tocilizumab

It seems as if all consultants have different ideas, I wasn't allowed to start the toc until about 3 months after finishing steroids and they wont let me have them while taking toc - not that I need them thankfully
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Date: 11.01.2015
From: Colin W

Subject: Re: Tocilizumab

hi Julie , how is the injections going , just wonder why they are not offering pens , maybe its because problems with the preservatives like with Enbrel

not had any infusions since end of september because of ongoing problems with my legs , 4 lots of antibiotics which done nothing for my RA , only differance not having the infusions is upping my steriods to 35mg from 25mg
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Date: 11.01.2015
From: Julie

Subject: Re: Tocilizumab

Hi Colin, injections going quite well, and I am doing them myself:) the consultant said I must tell him if I start feeling as if I cant do them and they will make arrangements for someone to do them for me at doctors or clinic. Which was nice to know.

I asked about the pens but because this is a trial I have to use the syringes that Roche say to use. I was told the other day that at the end of the trial if everything is still okay I will stay on Toc but will inject only every fortnight and I will probably have the pen one. I just am going to go from week to week and hope I don't go backwards.

Colin you must be feeling rubbish, that's a long time to be off your infusions. Did you come off because it made your legs worse? It is hard when using these drugs and they don't work well enough. I was told that it takes at least 12 weeks for Toc to start working and it can be 6 months before feeling full benefit - whether this applies to the way I am having the drug or it is general info. What will you try next, could you try the weekly injections? I wondered if the weekly injection gives a more even 'coverage' with less shock to the system rather than a big dose given by infusion at longer intervals. I still have pain in my knees, as the swelling goes down the more painful my bones feel.

Take care Colin and I hope you are feeling a bit better. I must say whilst on this trial I am being treated like royalty!!! what a shock I will get when I come off it, then its back to normal NHS treatment.
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Date: 12.01.2015
From: Emily

Subject: Re: Tocilizumab

Are the injections still in trial stage? I've been offered them but wasn't told (yet) it's a trial? Feel like a complete zombie after the infusion so hoping having it weekly will be better.
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Date: 12.01.2015
From: Julie

Subject: Re: Tocilizumab

Sorry Emily, I am answering in two of your thread.

You are asked first if you would like to take part in the trials and you have to complete loads of paperwork, have chest xrays, heart checks, bloods etc., beforehand and you only see the research team staff They give you loads of paperwork about it and you get letters from the drug company thanking you for taking part.

I don't know of anyone on the injections but I do know that Toc has been used for longer in Scotland.
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