Drug Trial - Visit 16

[skinnylizzy59]

Hi Everyone, well it was a telephone call really but it's termed a visit, so that's it then, drug trial over and done with. I've been fine this last month since the end of the use of the actual drug, no adverse effects and I even had my 'flu jab with no side effects. It's been good to share all my visits and information with you, I'll still be posting when I have something to say or ask or respond to, and thank you all for your feedback on the trial. Take care. Lizzy x

[Toci]

Thanks for sharing your journey with us.

[Hidden]

Hi skinnylizzy, thank you for keeping us up to date. How did you get on whilst taking the drug. Did it make a difference. I mentioned it to my consultant as I did phase one as you know and it was evident that I on it. She put my enquiry into her latest letter to my GP and said that she will be finding out how long till it is registered and comes on stream.

[Jessy11]

Hi Skinnylizzie, thanks for sharing your trial with us.

Will be interesting to hear the feedback

Keep well 🌻

[peege]

Good to hear from you Lizzy and flipping good for you for getting through it.

Wishing you good health and all the best for the winter.

It was about a year ago that we met 😃. Would you pass on my best wishes to Jill too.

Pen xxx

[skinnylizzy59 in reply to peege]

Hi Pen, lovely to hear from you. Sorry we met only the once but maybe sometime when you're up this way visiting Jenny we may get together. It was the coffee morning this morning but I couldn't go as I was looking after my nearly 4 year old twin granddaughters but I am in touch with Jill so will pass on your good wishes. She hasn't been well but I'll save the details for another time. Take care, Love Liz x

[Sohara]

Great news you have finished the trial and even better news that it is doing you good. Is it the Pulmaquin ( inhaled Cipro)trial that you have been on? if not what drug have you been trialing I only remember that you were doing a saline trial, but may have missed this latest one

Love Sohara

[skinnylizzy59 in reply to Sohara]

Hi Sohara, yes I was on Pulmaquin (R). I had a bad flare up about half-way through but that wasn't anything to do with the drug as I was on my month off. Thanks for your interest. Love Lizzy x

[Sohara in reply to skinnylizzy59]

Have they let you stay on Pulmaquin? I am so excited about this new drug as I think it will really help my psuedomonas. Did you get any clue as to when it will be available to us?

[Hidden]

I just browsed the forum & think you've been on a trial of nebulised cipro, is that right? Or was it inhaled? Well done and thank you, and it's good to know you're still keeping well a month later. Can't wait for this to be available, another weapon in the war against pseudomonas

[skinnylizzy59 in reply to Hidden]

Hi Fairlass, yes it was nebulised cipro, Pulmaquin is the brand name. Hope you are keeping well. Take care, Love Lizzy x

[jackdup]

Was there any improvement or change in your spirometry or 6 minute walk test at the end of the trial compared to at the start?

Thanks

[skinnylizzy59 in reply to jackdup]

Hi Jackdup, as far as I was concerned everything stayed the same and I didn't really know I was on any different drug at the end or during the trial although I could have been on the placebo during the main part of the trial, it was only when about half-way through that I was ill but not due to the drug as I was on my month off. Take care. Love Lizzy x

[jackdup in reply to skinnylizzy59]

Thanks Lizzy.

[Hidden]

Thankyou Lizzy,for giving us an update each time,good on you,for finishing the course.

Will look forward to hearing from you in the future xx

[skinnylizzy59]

Thanks to everyone for being in touch and for your good wishes. I will keep you informed when I know the outcome and whether I was on the placebo or the drug during the main part of the trial. Take care everyone. Love Lizzy x

[cofdrop-UK]

Hi Lizzy

Great to hear you have completed Phase III of the trial. Thank you so much for taking part in such a valuable NCFBE trial - such a selfless thing to do. Will they allow you to stay on the drug once they have found it to be effective and safe. I certainly hope so. Thank you also for keeping us in the loop during your trial journey.

Keep well sweet - we owe you much.

With love

cx

[Dedalus]

Thank you for keeping us updated LIzzy, and will be great to hear the outcome when you get it. x