I mentioned earlier this year that I was hoping to get on a trial of inhaled mannitol (aka Bronchitol) at RBH. The aim of the drug is to thin the sticky mucus in the lungs and allow it to be coughed up more easily, leading to clearer airways and fewer infections.
Well I've been on it for 6 months now. It's a double-blind trial but I must have the proper drug because the effect is amazing! Fewer infections, increased lung function, and my lungs are so much clearer. Now I know how it feels to breathe normally. I can do my physio in about 15 mins whereas beforehand it took over an hour, and I've gone from continual bouts of nighttime coughing to hardly coughing at all, so I feel wonderful.
They are still recruiting for the trial so if anyone has bronchiectasis and is interested in getting on it, I can give you the email address for the research team. I'm so glad I found out about it.
Hi Polly glad you're responding well to Mannitol. I've heard recently that nebbing Colomycin fot non CF bronchiectasis is in the new guidelines for treatment. I saw Dr Wilson a couple of years ago but it wasn't very heloful and said he doesn' t do asthma, lol. I don't grow psuedomonas but know of others who don't on the BRUs site but certain Consultants insist on this for a patient to be labelled as having bronchiectasis even if their bronchioles are dilated on CT scan. Do you grow any nasty bugs?.
hiya
Just pseudomonas, though as I haven't grown it recently I'm hoping - you never know - I might be one of the few people who manage to get rid of it
But I was diagnosed with bronchiectasis years before the pseudomonas - as you say, it's the dilated bronchioles which seem to be the real indicator, not the presence or otherwise of a particular bug
I neb colomycin, using an i-neb.
I've found all Dr Wilson's team to be great and now see a consultant called Diana Bilton who is both incredibly clever and very caring. I'm so lucky to have such brilliant treatment and now, with the inhaled mannitol (that study's being led by Dr Bilton) I am very optimistic for the future
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And it was going so well.........
