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COPD Trials

pepparuby1 profile image
16 Replies

Good morning everyone just wanted to share I'm taking part in more copd trials . I did this last year and the inhaler is now on the market (sorry forgot the name) I'm now trialling a new inhaler and it's quit intensive with lots of blood testing, spectrum testing and ecgs - but it's such a good thing I can do it. I can take days jholiday from work when I'm in London medical research centre. Not only this I have to measure my Pf morning and night so I'm learning more and more about my copd.

I was diagnosed 3 years ago after I quit the ciggies and it's a nasty disease

Just wanted to share this

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pepparuby1 profile image
pepparuby1
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16 Replies
cofdrop-UK profile image
cofdrop-UK

Good on ya pepparuby. What trial is it and what phase is it at? I wanted to take part in the inhled Cipro trial for non cf bronchiectasis but unfortunately I do not quite meet the criteria. I hope it is successful and will be of great benefit to you and many others with copd.

love cx

pepparuby1 profile image
pepparuby1 in reply tocofdrop-UK

Hey I think it's stage two so very early days

cofdrop-UK profile image
cofdrop-UK in reply topepparuby1

Ok thank you. Please let us know how it progresses. cx

Puffthemagicdragon profile image
Puffthemagicdragon

I've put my name down for trials but no offers yet.

pepparuby1 profile image
pepparuby1 in reply toPuffthemagicdragon

They contacted me via my doctors where I filled in a form to say I would do them and about for months later they phoned me - I think once you've done one lot they keep you on file but the requirements are very specific sp for This one I had to have moderate copd and female aged over 45

Puffthemagicdragon profile image
Puffthemagicdragon in reply topepparuby1

Thanks for the info.

Well done pepparuby. I've just discovered I've got mild copd so what you're doing is hopefully good for all our futures. Thank you.

pepparuby1 profile image
pepparuby1 in reply to
coastal1 profile image
coastal1

Hi ,

One thing I am curious about is , do you have to come off your existing medication to take part in the trial .?

It wouldn't affect me much as I am largely symptom free . However some suffer serious symptoms which are only controlled by their meds . What happens if they are just given a placebo .?

You mention ecigs and am interested in how these figure in the research .

I wouldn't mind talking part but probably live too far from London or any other major research centre.

I really admire your effort . Sorry if I seem nosy but I am genuinely interested.

Cheers Coastal .

pepparuby1 profile image
pepparuby1 in reply tocoastal1

Hey no that's fine I'm lucky because the trial last year was at the London chest hospital and I live in easy London and I also had 3 MRI scans free - chest X-rays to make sure no lung cancer etc so for me it's like having a full MOT.

Last year I had to drop the spiriva but took my other ventolin and symbicort and yes each time I don't know if it's placebo or not.

This time the inhaler I am testing I still take all my other medication oddly enough but I have to be there all day sometimes - it's a four month trial and I keep a diary

And here's the best bit I get paid to do it by the research company ever time I attend which is 8 sessions in four months

coastal1 profile image
coastal1

I had better get some fresh specs !!

In your first post thought you had said that you had been given " ecigs " ( electronic cigarettes ) part of the trial and half assumed that these were finally being tested. Now realise its "ecgs "as in the heart monitor test which you were given !!

Cheers Coastal .

pepparuby1 profile image
pepparuby1 in reply tocoastal1

Ooops yes

Dedalus profile image
Dedalus

How did you find out about the first trial? May like to do one/some in the future if eligible.

FarmerD profile image
FarmerD

I,m on permanent steroids so probably would,nt be eligible for most trials but would be interested and happy to take part if anybody has a link to pass on?D.

jackdup profile image
jackdup

If you measure your PF morning and evening have you noticed any improvement and do you notice any difference in your breathing as a result of the trial medication?

PompeyBob profile image
PompeyBob

Hi Pepper I volunteered for trials went for assessment back in Feb but was told I was too much at risk so weren't able to do the trials.

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