Drug Trial - Visit 3

Hi Everyone and Anyone who is interested, had Visit 3 (Day 28) this week. Just the usual checks, no adverse effects of the drug, sputum sample, blood pressure, temperature, heart rate, breathing rate and spirometry. No bloods, urine or 6 minute walk test. I did have to take the trial drug though. I was told not to take it before I went to Papworth.

What irritates me is that you are given a schedule of what will happen at each visit but quite often it doesn't but other things do. However, I was only there just over an hour this time. I arrived quite exhausted and my blood pressure was up a little because I had driven through that appalling heavy rain, it had stopped raining for my return for a short while then it started again. Next visit on the 27th October, don't bit your nails down to the quick waiting for the next exciting instalment! Take care, Love Lizzy x

15 Replies

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  • Thanksxxx

  • Thanks Lizzy..Its really good of you to keep updating us....Lets hope something good comes out of all this for you, and perhaps for everyone one day

    Love Sohara

  • Its really interesting to hear how its all going - thanks. Good luck on your next visit. TAD xx

  • Hi Skinnylizzy59

    Could you share what drug trial you are doing and what they are testing for?

  • Hi Sokrackers, thank you for responding to my post, here is the title of the study (are you ready?) - A multicentre, randomised, double-blind, placebo-controlled study to evaluate the safety and efficacy of Pulmaquin (R) in the management of chronic lung infections with Pseudomonas aeruginosa in subjects with non-cystic fibrosis bronchiectasis. Hope you understood all that. The trial lasts a year and I have to go to Papworth about once a month after my next visit so it is a long haul.

    If there are any questions that I might have the answers to please ask. Take care, Lizzy. x

  • Hi thanks skinnylizzy,

    Thanks but no thanks - erm I think I might just keep my head down on this one!

    Well if it makes sense to you you are very clever!

    Take care and keep us up to date with the easy to understand stuff

    Kindest regards and best wishes

  • Thank you so much for keeping us in the loop - really interested in this study. Can't recall offhand if you are doing the inhaled Cipro - don't think it was the inhaled one is it?

    Hope you have a better journey on the 27th. Well done hun for taking part in this trial.

    love cx

  • Hi cofdrop, thanks for your response to my post. The study is using nebulised Pulmaquin (R), I take Cipro tablets when I have a flare-up. Take care, Love Lizzy x

  • If I remember correctly is this the trial hun?

    clinicaltrials.gov/show/NCT...

    love cx

  • Hi cofdrop, thanks for pointing me in the direction of 'clinical trials' - yes this is exactly the trial I am on, makes interesting reading and now I know a bit more about the drug but, of course, I may be on the placebo. Take care, Lizzy xx

  • Your welcome hun. cx

  • Keep us posted about any progress. I have pseudomonas and don't have CF so I'm very interested. At the minute I'm on Colomycin nebulisers. Hoping they work. What have you been on previously?

  • Hi grannybell, thanks for your response to my post. I nebulise Salbutamol twice a day and the trial drug once. I haven't noticed any particular difference yet but then I could be on the placebo. I also use Spiriva and Fostair and I take Azitheromycin for my chest, I take a load of other tablets for other things. If I have a flare-up I take Ciprofloxacin. Hope this is of help and interest. Take care, Love Lizzy x

  • Very interesting ,thanks

  • Thanks. x

    Margaret

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