Drug trial - visit 12

[skinnylizzy59]

Hi Everyone, I've just checked my posts and find that several are missing - hey ho, you haven't missed much but it is frustrating when I've spent time trying to keep you all up to date with the trial.

Anyway, Visit 12, yesterday, was very unremarkable, just the usual vital signs but no bloods, no spirometry. I did see a doctor who listened to my chest and reported the usual 'crackles'. I asked him about a pain I sometimes get at the bottom of my left lung and he said that it was probably the infected mucus which needed moving so I suggested I see a physiotherapist. She reviewed my medications and suggested I do the nebulised salbutamol first followed by my flutter and then all my other inhalers and then the trial drug. This made sense as the salbutamol loosens the mucus and then the flutter should loosen more so I should be able to clear my chest better. This may help some of you who are having problems clearing their chest, then on the other hand, it could just be old hat. Have a good day. Take care. Love Lizzy x

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I will pass that little tip onto my husband - thank you. So irritating when you think you have posted only to find you haven't! Hope you are keeping well. Lots of love TAD xxx

[cofdrop-UK]

Hi Lizzy

Thank you for the update. I am always interested to hear how the trial is going and you are whilst on it.

I am surprised they did not do spirometry or bloods but I expect they have their reasons.

Also surprised they did not explain the order in which to do your meds whilst taking nebulised, or in your case inhaled antibiotics. It is always nebulised or inhaled bronchodilator first to open up the tubes - normal or bypertonic saline if you use this to loosen up the gunk - physiotherapy (whatever method you use) to clear out as much mucus as you can - nebulise or inhale antibiotic.

If I remember correctly you said earlier that the trial finishes in September and then you can have the actual inhaled Cipro for a month - is that right? I read somewhere they were expecting completion of this phase in 2016!

I always look forward to your posts about this trial and have missed the lost posts. I would also like to thank you on behalf of all bronchiectatics for taking part in this very important trial.

I hope you have improved from your nasty infection.

Please let us know how it all goes.

Love cx

[jenss]

Thanks for the updatexx

[skinnylizzy59]

Hi Jenss, TADAW, flibberti and cofdrop, many thanks for your continued support. I am trialling Ciprofloxacin or a placebo, we think it's the placebo with me having such a rough 6 months whilst on the trial. Having finished the home iv's, which lasted 4 weeks, and 2 weeks on Ciprofloxacin tablets and prednisolone, I think I am almost back to normal (for me). Whilst on the last dose of tablets I lost a lot of weight and had terrible mouth ulcers which my Research Nurse thinks was down to the steroids but, as I say, I am on the up now hopefully. I am now on my last month of the Ciprofloxacin/placebo, then it's a month off and then I have a month on the actual drug (Visit 14), I then have Visit 15 followed by Visit 16 which is telephone call! Then that's it, another year gone!

Thanks again everyone for your interest and support. Take care, Love Lizzy x

[cofdrop-UK in reply to skinnylizzy59]

It will be really interesting for you to see how you feel when you know for sure you are on the actual drug. Glad your health has improved - you did sound quite poorly.

love cx

[peege in reply to skinnylizzy59]

Hello Lizzy, you are absolutely marvellous to be doing this trial.

I'm sorry I didn't realise how poorly you've been either and feel badly that you've been suffering. Sending you some healing hugs and really hope you're on the mend. Roll on visit 14 for the real thing.

Years ago we were given a miracle ulcer cure by a German friend. It tasted foul but by golly it was amazing. It had a German name that translated as essence or extract of rhubarb. I'll google it & see if I can find it.

Much love, P xxx

[skinnylizzy59 in reply to peege]

Hi Pen, thanks for your post. At the moment I am feeling fine but after the last 3 months I wonder when the next bug is going to strike. The Doctor said, on Visit 11, that if I didn't improve I would have to go into Papworth and they would try different drugs or combinations thereof to see what suited me, let's hope it doesn't come to that as Papworth is quite a way away from Thurston for friends and family to visit. Usually when I am over the first few days of treatment I feel O.K. and start making friends with the others on the ward so that helps to pass the time. It all came home to me on Wednesday, the anniversary of 7/7, I was in Papworth then, I can even remember what I was doing when they switched on the tv in the ward.

Anyway, enough about me, I hope you are keeping well and have survived all the past traumas and are now really settled in Cheltenham and enjoying living there. So pleased you have a new little friend to get you out and about on 'walkies'. I'll bear in mind your details about rhubarb and if I have to have steroids again I'll be onto Amazon tout suite. (!) Take care, Love Liz x

[peege in reply to skinnylizzy59]

Thank you Lizzy for your good wishes - you never know you might be in this neck of the woods one day for a cuppa.

I really hope this is the right Rhubarb stuff. This one looks similar in the tiny bottle & it looks dark. Fingers crossed and apologies to you and Flibberti if I've given you duff advice.

Our mutual friend is quilting a quilt today for St Nicholas Hospice so I thought of you 😃 P xxxx

[peege]

So annoying, I can picture that little bottle of tincture and its box. We had it for years, you needed such a tiny amount.

Will let you know if I find it xx

[peege]

Haha, okay mistress flibberti x

[peege]

Nature's Answer Rhubarb Root Extract 1 fluid oz £4.18.

Via Amazon looks like the stuff. It was a dark, thick liquid. Ours had a tiny brush in the lid as you find in a bottle of nail polish.

Hope it works xx