Drug trial - Visit 14

Well, here we are nearly at the end of the trial, I am now on the 'real thing'!

Visit 14 was a very long one, I had a full physical examination, a 12-lead ECG, lung function (spirometry), 6 minute walk test, urine sample and blood test, and then the study drug given and my lung function checked by spirometry 4 times over a 2.5 hour period. I then had a 50 minute drive home so you can imagine I was pretty tired by this time - I left home at 10.00 a.m. and arrived back at 4.30 p.m. I did manage to get some lunch at 2.00 p.m. but it was a busy day.

I have been on the real drug now for nearly two weeks and there are no significant side effects, just some disturbed sleep because I am restless but a quick walk around the house and back into bed and I'm away again.

So my last visit is on 12th October followed by a telephone check up a month later.

Bye for now and I hope you are all keeping as well as you can. Take care, Lizzy x

21 Replies

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  • Thank you for posting and good to know you feel ok on the real stuff. Robin

  • I don't wonder your tired Lizzy, what a blooming long, tidings day !!!

    I hope the new drug makes a big difference to your breathing. Sleep well and thanks for keeping us informed. xx

  • Well done Lizzy. Great to read your updates. Especially hearing that you are now receiving the new drug and without any problems or side effects. Wonderful reward for you. Thank you for pioneering this research. Rib

  • Hello skinny list. Would be interested to know bznd of your new drug. Marry

  • Hello skinny,lizzy. Mucked up last enquiry, may I ask the name of your new drug. Mary

  • Hi Mary, the drug is called Pulmaquin(R) - a nebulised form of ciprofloxacin. Hope this helps. Lizzy x

  • Thanks for the update Lizzy,fascinating stuff.Look after yourself after all that hard work. 💐 D.

  • Great news Lizzy, you survived! You are to be highly commended I reckon.

    Good on you and I'm glad you're rewarded with the actual drug now. All the best with it xxxx

  • Hi Pen, thanks for your good wishes. Take care, love Liz x

  • Hi Lizzy

    Well that was quite a long MOT for you sweetheart. I am so glad you are now defo on the 'real thing' and even more pleased for you there have been no significant side effects. This really bodes well. I appreciate 2 weeks is a very short time but I wonder if you feel any noticable benefit, although I expect the benefit would be that long term it would keep the lid on the b******.

    You know just how much we appreciate you doing this trial, sooo much, especially as you have been so poorly.

    Thank you also for updating us on the progress of the trial.

    RESPECT.

    With love cx

  • Thanks Cofdrop, your encouragement and appreciation makes it worthwhile. Take care, love Lizzy x

  • Thanks to all who have supported me over this trial, just two weeks to go - yippee! Love Lizzy x

  • Lizzy could you just clarify. I know there are 2 trials, inhaled Cipro and Nebulised Cipro in non cf bronch. I always thought you were on the inhaled cipro but in your reply to Mary you state nebulised.

    Thank you for your kind comments.

    Love cx

  • Hi cofdrop, I use a nebuliser for the trial. Sorry if you got confused but the trial has always been for nebulised drug. Have a good day. Love Lizzy x

  • Thanks for clarification hun.

    cx

  • Great news skinny lizzy. Great news. Are u IPF or COPD. My husband Bill is IPF. 0n a more personal note - and u may decline an answer - are u in UK or USA. Mary

  • Hi Mmaarry, I live near Bury-St.-Edmunds in England.

    Have a good day. Love Lizzy x

  • Thank u skinnylizzy. Bill has IPF. So we are trying everything to make life easier. We live in victoria Australia. Think u for your generous replies. Mary

  • Hi Mary, my daughter lives in Rockhampton, a long way from you I know but it just shows what a small world we live in now with all the new technology. Liz x

  • Well done you! I too took part in some trials last year and the year before with the British heart foundation in London - lovely people there. Unfortunately I started a new job which meant I couldn't participate this year but it's great work to test the new drugs

  • Hi pepparuby1, I have done several trials of different drugs with Papworth Hospital near Cambridge over the years, all good fun! Take care. Lizzy x

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