Drug Trial - Visit 13: Hi again... - British Lung Foun...

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Drug Trial - Visit 13

skinnylizzy59 profile image

Hi again Everyone, I'm, hopefully, re-posting this as my previous post went missing!

Nothing remarkable about Visit 13, just the usual vital signs, temperature, blood pressure, sputum followed by a 6 minute walk, no bloods and no spirometry. The walk went well despite my osteo-arthritis in my right ankle, I wasn't short of breath or tired. The doctor listened to my chest and said I had crackles all over both lungs when I usually only have crackles in the bottom of my right lung so she discussed possible treatment when I've finished the trial. I might have to go on the ward to be treated by different drugs to see which suit me or I might have home iv's again but no meroperum because it was that that upset my whole system last time and made me really quite unwell.

I'm nearing the end of the trial now, I'm on a month off and then at Visit 14 after a thorough examination, ECG, bloods, spirometry etc. I will be given the 'real thing', no more placebos. I do that for a month then have another thorough examination, Visit 15, as in Visit 14, then a month off and then another visit, Visit 16 for a check up and that's it, another year gone!!

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6 Replies

Thank you so much Lizzy for taking the time to retype details of your viisit 13. It's a pain that you have crackles all over both lungs. I hope they get this sorted for you when this trial is over. What happened with the Meroperum hun? You have done brilliantly to get to this point and to continue selflessly with the trial when you were so poorly. Thank you so much.

Please let us know how visit 14 goes.

I am wondering how long it will be before the results of phase III will be published.

With love and respect


Hi cofdrop, when I had the Meroperum as part of my home iv's it really upset my whole system and I was going to the toilet for a pooh every time I had a wee, it wasn't diahorea (!) but 6 times a day was a bit much. Also I felt so tired, needless to say I lot quite a lot of weight. A sample was sent to the lab. for analysis in case it was C. Diff. (picked up when I had my cannula fitted) or any other nasty bug but it was clear thank goodness.

Sorry if this is a bit graphic but you did ask -LOL ;-). Take care. Love Lizzy x

Be as graphic as you like Lizzy 'cos I know that feeling. I had the same with Cephtazadine IVs but I also have IBS and get the same symtoms now with any oral course of abs - it's the pain and urgency that gets me down the most. Now on a FODMAP diet from GI dietician.

Sorry this happened to you Lizzy and I really hope the IVs used when your trial is complete will work well for you with no side effects.


Hi cofdrop, sorry to hear you have IBS, it must be really unpleasant for you but hope the new diet helps. Take care. Love Lizzy x

Sorry to hear you are feeling unwell Lizzy. It's definitely time for treatment when the crackles are widespread. Shame the Meropenim (?) didn't suit you because it can work really well for Bronch infections. It saved my bacon last year when Tazocin was completely ineffective. I hope they find the one that works best for you..

It'll be interesting to see the outcome and if you really benefit from it all. I'm still learning.

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