As some of you may know i have been asked by guys hospital if i would do a drugs trial for an inhaler specifically for use with COPD.
Having looked at all the info about it ( don't know what the drug is because you are not allowed for fear of influencing the result, but know it is a inhalant and this is its 3rd trial) i have made the decision to do it.
Next week i have to go to see if i am suitable for the trial.
Funny thing is i thought i would be apprehensive but i am actually quite excited - its 2 weeks in a private part of the hospital and i get paid for it. I know this sounds daft but it will be a nice break away!
My only question at the assessment will be - if this new medication works for me will i be able to continue it ?
Seriously lets hope the trial goes well and it could help 1000's
don't know Pez but got me a dongle just in case -
Knowing this is the 3rd trial makes me feel safer about doing the trial and knowing that it could benefit so many people gives me a sense of satisfaction but i have to admit i am doing it for purely selfish reasons - i want some medication that can get me back to work and if this helps i'm all for it.
If i am lucky enough to get chosen at the assessment will let everyone know how its going and if its any good !
read all the bumpf on it and had a chat with a few of my friends on here because i was unsure at first - but knowing it has had 2 previous trials helped a lot and knowing that the only other people on this trial have COPD helps.
Just so keen to get some of my life back i will do anything within reason !!
Good luck crazylady, hopefully this might just help all COPD sufferers,that is if it is released quite quickly after the trials, certainly hope so we could all do with it at times. regards x
All the best for the trial, hopefully it will provide the benefits it is intended to, I know it sounds strange but a medical holiday! If the drug trial is successful it may help in some to changing the plans relating to the withdrawal of funding for the SCNs that we are campaigning against. All the best, Richard.
i never thought of that richard - you are right xx
Good luck krazylady. Can't wait to hear how you get on. It would be an awful thing though as you say if the inhaler worked for you and the powers that be decided against it. Ask for some free samples (after you get your pay though)! Imagine - you might go down in history along with Perce as a pioneer in medicine. However the trial goes hope you will still come on and cheer us all up. Well done in going through with this you are a very brave krazylady xx
thank you all xx fingers crossed for me now !!!
All good wishes krazy, keeping fingers crossed you are accepted and hoping the med works a treat too looking forward to updates already. Will they tell you after the trial what the drug is ?
After the 3rd trial success I think it goes to EMA for approval and continued testing before NICE approve it but I guess the helpline will know more details about the procedures of getting the drugs approved for NHS prescription, it could be another 2 years before docs will prescribe, if it passes all the testing and trialling EMA, NICE etc.
Gud luck Krazy lady hope you enjoy it too. Do s this hotel err sorry hospital av a pool. Just kidding, you l be doing a sterling job for all of us.
I'm so pleased for you, of course you might get the placebo rather than the drug, but try and continue with it anyway as your involvement will help further the cause of important research which will lead to new treatments for you and others.
I took part in a year-long trial 2 years ago, of a new inhaled therapy, and it has changed my life! I knew within a month or so that I was getting the real drug because my lung clearance and breathing were so much improved. Once you finish the trial, if you've benefited from it, it's usual practice - so I gather - for the pharma co to continue supplying it on compassionate grounds until it's been licensed &approved by NICE & is available on the NHS. So far, I don't know anyone else who is on my drug, NICE is still deciding. If you've been on the placebo, but the results of the trial have been encouraging, they'll let you try it at the end of the trial to see if you benefit, and then you can have compassionate use. It's almost like the payback for doing the trial.
I didn't get paid but I got expenses which were generous enough to cover my travel expenses and the cost of a nice lunch every time I went to the hospital.
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