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Rank: Member  Groups: Registered
Joined: 12/16/2009 Posts: 21
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Hi, just had my bi-annual RA appt with my consultant and he has asked me if I would go on a year's drugs trial, where they wish to test the theory of different combinations of already licensed RA drugs. I'm going back next week to discuss it more, but wish to know if anyone else has experienced (or is now experiencing) anything like this. I appreciate your honesty replies.  Take care. Woody x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Woody,
I took part in a trial for humira..It was already licensed but they were researching different doses.
It lasted for 6 months and the humira really helped my RA, and after the trial I was prescribed it and still take it.
You get all the information before you decide whether you want to be included in the trial and then you have tests to see if you meet their criteria.
Everything will be explained to you and you will be given the chance to ask any questions you want before you make your decision.
So if you think you will benefit, ask for more details.
I'll try to answer any other questions you might have.
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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I went on a trial for Enbrel
It was a new drug then- not licensed but into level 3 trials.
I did very well on this.
I have taken other very new drugs that I have been unlucky on and now this is something I wouldnt be prepared to do again.
but to anyone who wants to give it a go- bearing in mind they are approved and experienced drugs, I can 100% see why it would be appealing and why you should have every chance to give it a shot.
Jenni xhow to be a velvet bulldoser
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Rank: Member Groups: Registered
Joined: 12/16/2009 Posts: 21
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Thanks Doreen and Jenni for your very informative experiences, I will definately want to have more information before deciding, I feel obliged to "help" in the name of research but have only just (last couple of months) found the right balance of meds and so a little worried. Thanks again. Woody x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I think one thing which may help you is that when you are on a trial, you will have far more check-ups and rheummy appointments than you do now. They DO keep a very, very close eye on things.
All the best with making yor decision.
Love Jeanx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Woody,
Only offer to take part if you think you will benefit, don't feel that you have to, especially if you have only just got your meds sorted.
I only agreed to take part in the trial I did because it was a way for me to get onto the anti-tnfs.
Doreen xx
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Rank: Member Groups: Registered
Joined: 12/16/2009 Posts: 21
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Yes, they said I would be monitored monthly, which is good, but again I work full time with 2 younger kids it will be quite full on.
Thanks again. Woody x
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 51
Location: Blackburn, Lancashire
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I also went on the trial for Enbrel before it was licensed Was the best thing I did because I had tried various drugs that had not worked and I was on a high dose of steroids.
In the end it can only be your decision. Make sure that you have all the facts so that you make an infomed choice. If you then do not feel 100% happy, then to me, it seems that the answe has to be no.
Best wishes
Lisa
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Rank: Member Groups: Registered
Joined: 12/16/2009 Posts: 21
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Thanks everyone for sharing with me. I am also back on steriods again, the last 6 months I was weened off but I was in agony and my mobility was quite comprimsed - maybe a combination will help me. I will certainly be asking loads of questions before going ahead. Cheers, wishing everyone a good and safe weekend in the snow! lol. Woody x
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