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Date: 11.09.2013
From: Emma

Subject: Tocilizumab or abatacept anybody on them

Hi everyone, hope you are all ok. Please can someone help me with this. I have just seen my rheumy and my humira which I was on is not working, now they want me to either go on tocilizumab or abatacept infusion has anyone been on these or are on these, I would loved to here from you as if you have had any side affects and what to expect. I look forward to hearing from anyone who knows, to tell the truth I am a bit scared. Thank you Emma x
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Date: 11.09.2013
From: Colin W

Subject: Re: Tocilizumab or abatacept anybody on them

hi Emma , cant help you , on Golimumab (Simponi) myself & its not worked so hope they will try something else sometime , those drugs are pretty new , the National Rheumatiod Arthritis Society website has information on both these drugs + helpline which could answer any questions you have

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/abatacept_orencia.aspx
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Date: 11.09.2013
From: Susan Leigh

Subject: Re: Tocilizumab or abatacept anybody on them

Hi
I have been on abatacept and am now on tocilizumab. No obvious side effects from either drug. Monthly infusions, abatacept about 30 mins and toc. about an hour.
Might have put a bit of weight on with the drugs. I don't know much about the side effect profile.
The drugs have worked for me; the abatacept worked quicker than the toc. Let me know if you have more questions, happy to answer them.
regards
Susan
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Date: 14.09.2013
From: Emma

Subject: Re: Tocilizumab or abatacept anybody on them

Thank you for your reply abatacept I think I will try first , I'm glad they have worked for you I'm hope they work for me to. I hope I don't put on to much weight I find it hard losing weight as it is lol. Once again thank you if I think of any other question I will be in touch, take care emma x
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Date: 17.09.2013
From: Susan

Subject: Re: Tocilizumab or abatacept anybody on them

You are welcome Emma. I felt the abatcept work within days whilst the toc took much longer. These were the first (and only) drugs that have touched my joint pains. I do hope they work for you.
Where are you being treated? I am at UCH in London and the infusion clinic is great.
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Date: 17.09.2013
From: Emma

Subject: Re: Tocilizumab or abatacept anybody on them

Hi Susan, I am going to be treated at darent valley dartford, if I don't feel comfortable there I might go to ucl. My husband goes there for a different matter and they seem really nice.im glad that something has worked for you, I have ra jaw down but my hands are really bad with lots of nodules and inflammation , I hope this is going to be my miracle drug lol. Thank you for this information it has made me feel a bit better and is much appreciated. Emma x
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Date: 18.09.2013
From: Susan Leigh

Subject: Re: Tocilizumab or abatacept anybody on them

Good luck Emma. I really hope it works for you. Certainly has for me. I had to stop Abatacept for other reasons and was off meds for a good 6 months and the joint pains came back quite aggressively.
When do you start?
Susan
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Date: 18.09.2013
From: Heather

Subject: Re: Tocilizumab or abatacept anybody on them

Hi Susan (sorry to hijack this thread, Emma)
I got to UCH too! Are you under Dr Giles? I'm under his care but have been seeing Dr Maria Moiyez (not sure I've spelt that right).
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Date: 18.09.2013
From: Emma

Subject: Re: Tocilizumab or abatacept anybody on them

Hi Susan, I have to go back in 4 weeks to tell them what meds I would like to have, what a lovely choice lol. How long have you been on these meds, how long have you had ra. I don't know what they are going to do with my humira if they take me off it before or take me off it when I start treatment. Thank you for your advice Susan , take care emma x
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Date: 19.09.2013
From: Susan Leigh

Subject: Re: Tocilizumab or abatacept anybody on them

Hi Heather
No I see Prof Ehrenstein, very very nice. I have being seeing him for about 5 years and each time I go to the clinic I always see him. Great service at UCH. I also see Dr. Fitzclarence (another rheumatologist for my bone density issues.
regards
Susan
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Date: 19.09.2013
From: Susan Leigh

Subject: Re: Tocilizumab or abatacept anybody on them

I have other health issues so not straight foreword. This time I have been on toc since the end of January. I was on it before for about 6 months then stopped. I was also on abatacept for about 6 months and had to stop that as well. This wasn't due to side effects. I am not sure that I have RA although I am being treated for it. I don't have a positive blood test for RA. I have more of an inflammatory arthritis which is not straight forward. I have tried all the drugs and they either don't work or I can't tolerate them.......these 2 are the only 2 drugs that work and I can tolerate.
Keep in touch
Susan
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