Clinical studies for new copd treatment - Lung Conditions C...

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Clinical studies for new copd treatment

Fantasy3 profile image
Fantasy3
•49 Replies

Hi all.

I am getting very excited.

I have been chosen to accept clinical studies to help find new medication for people with copd.😊

Wow! Wouldn't that be brilliant.

I get 24/7 access to study doc/nurse in case of any unforeseen probs.

Just thought I would let you all know.....

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Fantasy3 profile image
Fantasy3
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49 Replies
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Sohara profile image
Sohara

Sounds fantastic. Do let us know how it all goes ? Is there a placebo group?

Fantasy3 profile image
Fantasy3 in reply to Sohara

Hi,

No,no placebo.

You have to cease taking your own meds,and replace with the trial meds,so cannot really have a placebo.x

Sohara profile image
Sohara in reply to Fantasy3

That's really good news about the placebo, as the new drug/inhaler whatever, will either improve things for you or they wont, you will be monitored throughout so a win win situation for you :) :)

mmzetor profile image
mmzetor

a good cause and good luck hope it works out well

Fantasy3 profile image
Fantasy3 in reply to mmzetor

Thank you.xx

carolg1 profile image
carolg1 in reply to Fantasy3

Hey I'd volunteer for something like that anything to try and get an answer to this awful disease xx well done you any info appreciated x

Wouldn't it be great if they could help us without steroids been involved.

Thanks for putting yourself forward for the studies

Good luck, keep us posted, how long will it last,

Sally xx

Fantasy3 profile image
Fantasy3 in reply to

Hi Sally.

Yes,it would be great hey.

I don't think that time will come very soon tho.

But hopefully,in the future they may find a cure for copd.

Can only hope.

The trials are 55 weeks.long time.

Thanks for the comment.x

peege profile image
peege in reply to Fantasy3

Wow, over a year. Bravo you Fantasy. Good luck with it x

Elorac profile image
Elorac

Good luck let us know how it goes

Fantasy3 profile image
Fantasy3

Will do......the trial is 55 weeks.

But will update as and when.

X

Neo7 profile image
Neo7

Wishing you all the best with the trials, would make yo feel wonderful if ( YOU ) found a solution, would have your name in lights.

cofdrop-UK profile image
cofdrop-UK

Well done Fantasy. Do you have a link of the trial details please?

cx

Fantasy3 profile image
Fantasy3 in reply to cofdrop-UK

Hi cofdrop.

I don't im afraid.

It's a company called medinova.

If that's any help.x

Ohtwo profile image
Ohtwo in reply to cofdrop-UK

Not sure where you live but I've just applied. MEU in Wythenshawe are looking for volunteers.

Kindest Gwyneth xxx

cofdrop-UK profile image
cofdrop-UK in reply to Ohtwo

Thank you Gwyneth but I wouldn't meet the criteria as I don't have copd but have bronchiectasis and asthma. I am however, interested in trials for all lung conditions, especially the inhaled cipro at the moment that Lizzy is on. It was thought that I would be a candidate for that but again I did not quite meet the criteria.

love cx

Ohtwo profile image
Ohtwo in reply to cofdrop-UK

These trial are for people suffering from, Asthma, Chronic Bronchitis/Emphysema, allergies or Cystic Fibrosis.

Kindest regards

Gwyneth xxx

cofdrop-UK profile image
cofdrop-UK in reply to Ohtwo

Do you know if you meet criteria if you have more than one lung condition?

cx

Ohtwo profile image
Ohtwo in reply to cofdrop-UK

I am not sure. I can email you a copy of the leaflet I have if you want or you can ring them on 0800 655 6553

Kindest regards

Gwyneth xx

cofdrop-UK profile image
cofdrop-UK in reply to Ohtwo

Thanks Gwyneth for no. I may mention it to con next week.

cx

skinnylizzy59 profile image
skinnylizzy59 in reply to cofdrop-UK

Hi cofdrop, trials are usually condition specific like the one I'm on, non-cycstic fibrosis bronchiecstasis with pseudomonas aeruginosa causing lung infections. By the way I won't be starting the 'real thing' next week as the company hasn't sent the drug to the Research Centre so don't know what is going to happen now as the month on could end in the middle of my holiday which isn't very viable. Will keep you up to date. Take care. Love Lizzy x

cofdrop-UK profile image
cofdrop-UK in reply to skinnylizzy59

Thanks Lizzy. Yes they usually are condition specific.

Oh that's a bummer. I wonder why they haven't sent it. Grrr. You have done your bit for the trial. I do hope they can still give you the month of the real inhaled Cipro - especially as you were of the opinion you were on the placebo - I would have thought it most important. Hope they get this sorted out for you.

This could be so exciting for non cf bronchs and it is in no small part because of people like you hun. Let's face it apart from Bronchitol trial there has been little else for us.

Good luck - I know you will keep in touch.

love cx

in reply to cofdrop-UK

Hello. Sorry to but in! are you on a trial of inhaled cipro or nebulised? Ive grown this pseudomonas a few times but cannot take cipro tablets now. Thanks, robin

cofdrop-UK profile image
cofdrop-UK in reply to

Lizzy is on the phase III trial for inhaled Cipro. I can't take oral Cipro and nebulise Tobramycin but if this inhaled Cipro turns out to be effective and safe it could well be a useful option for us.

btw you're not butting in robin - your posts are always welcome.

cx

in reply to cofdrop-UK

Cofdrop, thank you. Ive only just heard about this trial. It would be marvellous to have inhaled cipro as an option as you say. Thank yoou to skinnylizzy59 too, robin

cofdrop-UK profile image
cofdrop-UK in reply to

ukmi.nhs.uk/applications/nd...

Hope you find this helpful robin.

cx

in reply to cofdrop-UK

Thanks cofdrop, will try to remember and ask about this when I go to Royal Brompton, waiting for appointment,robin

cofdrop-UK profile image
cofdrop-UK in reply to

YW hun. xxx

That's cool. I wish I could take part in one. I keep putting my name down but no luck yet.

Keep us informed .

Fantasy3 profile image
Fantasy3 in reply to Puffthemagicdragon

I didn't actually put my name down for it.

My name was put forward by a friend.

Obviously,I'm anxious,but im sure all will be good.

X

Ohtwo profile image
Ohtwo in reply to Puffthemagicdragon

Not sure where you live but I've just applied. MEU in Wythenshawe are looking for volunteers.

Kindest Gwyneth xxx

Ohtwo profile image
Ohtwo in reply to Ohtwo

Sorry meant to reply to puff

Puffthemagicdragon profile image
Puffthemagicdragon in reply to Ohtwo

There are trials in the Cambridge area near my neck of the woods but I've had no offers as yet.

Ohtwo profile image
Ohtwo in reply to Puffthemagicdragon

Not sure where you live but I've just applied. MEU in Wythenshawe are looking for volunteers.

Kindest Gwyneth xxx

Lynda1952 profile image
Lynda1952

Good luck,hope you get on really wellxx

corsaking profile image
corsaking

I hope all goes well Hope you keep us updated

Jeanjt profile image
Jeanjt

Good luck keep us informed how things go

stephne profile image
stephne

good luck,where are you based?

Fantasy3 profile image
Fantasy3 in reply to stephne

Hi,

Of course I will keep everyone updated.

I'm in romford.

The study trials are in Romford too,so no travel.

They do supply a cab there and back though,which is brill.

Magpuss profile image
Magpuss

55 weeks, thats quite a commitment-good luck, and thanks to everyone who takes part in these trials.

casper99 profile image
casper99

I hope you get the very best outcome of this trial fantasy, your a good one, putting yourself up for this. Well done and thank you. xx

Fantasy3 profile image
Fantasy3 in reply to casper99

Thank you.x

jimmyg23 profile image
jimmyg23

Very pleased for you hope everything goes your way please keep us all informed how you get on

Wishing you a great outcome,go girl! xx

Fantasy3 profile image
Fantasy3 in reply to

Thank you😊

It's so nice to have so much positivity.

X

melios123 profile image
melios123

Sounds great , please keep us updated

Lydia

Hello fantasy and well done for getting on the trial. What drug is involved please? Thanks, robin

That's really great news, how exciting :) Look forward to your updates!

Ian_D profile image
Ian_D

I am taking part in the TWICS 12moth trial. Is anyone else?

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