Rank: Advanced Member  Groups: Registered
Joined: 2/7/2013 Posts: 71 Location: Suffolk.
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Have any of you taken part in drug trials?
I saw the consultant yesterday and he is putting me forward for a drug trial to get me onto Tocilizumab. The aim is to get me onto the Tocilizumab and off the methotrexate as the methotrexate which seems to have stopped working and is also making me unwell.
A nurse called me today and is sending me some literature, then calling back in a few days. Are there any particular things I should think about or ask?
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 51
Location: Blackburn, Lancashire
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I was part of the Embrel trial, which changed my life for the better. I would suggest that as you think of any questions you may have, write them down, as you may not remember them when the nurse phones.
I wanted to know:
How long until I see any improvement?
What are the possible side effects?
What is the schedule for monitoring?
Who is my point of contact? For me this was my usual RA nurse.
What is the length of the trial?
Is it already licensed in other countries?
Obviously you will have your own questions, but as far as I can remember, the above were some of the answers I wanted.
Best wishes
Lisa
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 51
Location: Blackburn, Lancashire
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Louisa
Have you made a decision yet?
Best wishes
Lisa
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Louisa Always wary to hear of people being referred for drug trials that are outside the NICE guidelines. Please do consider carefully as Tocilizumab (which I'm on incidentally) has only been given approval for use with methotrexate. I have had many problems with MTX over the years but always end up coming back to it for its efficacy; sometimes you have to put up with the junk that comes with the treatment!  Perhaps a very small dose of MTX may do the trick alongside Toci?? Good luck in your decision. Lyn x
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