Nebulised Colomycin Trial

[Homer12]

Hi all

I’m a asthma,Bronchiestasis sufferer and I’m going on a nebulised Colomycin trial soon.

Had anyone who uses this had an any great success with it and is there any side effects taking this ?

Many thanks 😊

[Hidden]

I'm sorry that nobody has come to talk to you as there are several members who nebulise colomycin on a long term basis very successfully. Over the years I have nebulised it several times, as a prophylactic to keep down pseudomonas numbers. Unfortunately, each time, after about a month I began to be tight chested and breathless as a reaction to it (bronchospasm) and so cannot nebulise it any more. It is silly to me that they make you have a trial before you use it when any reaction usually starts a few weeks into nebulising. It is good at keeping down the pseudomonas if you can tolerate it. I suggest that you give it a go and see how you get on. As I said, many people nebulise colomycin with very good results.

[eleanordigby]

Hi Homer! Littlepom’s reply has bumped your question up - sorry I hadn’t noticed it before.

Yes, I’ve got asthma + bronchiectasis too and have nebulised colomycin for over 10 years. It suits me fine, and mostly suppresses the pseudomonas, although it does sometimes get out of control eg if another infection sets up on top. At first it made me quite wheezy but I sorted that with two puffs of Ventolin beforehand, but now I’ve got used to it & don’t need that

[busygardener]

hi,i was put on colomycin ,first time lasted a week before i went into bronchospam.My consultant then tried me on it again a couple of months later,i then went into bronchospam after 4 weeks ,this then took me 2 months to get under control ( was not a happy time ) Be aware of this as i know other people who went into bronchospam after a month .When they first put you on it they monitor you for an hour after first dose to check any side effects .Good luck .

[Mooka]

I’ve nebulised colomycin for 5 years. I also had a tight chest and so salbutamol was added and I nebulise this at the same time. It’s kept the pseudomonas under control but I’ve had a couple of other infections during this time. It’s just a pain if you want to go away as the portable nebulisers aren’t powerful enough to nebulise the colomycin. Good luck. Let us know how you get on.

[eleanordigby in reply to Mooka]

Hi Mooka. Have you looked into getting an Ineb? If your gp will prescribe the Promixin brand of colomycin, Philips will let you have one in loan. They’re brilliant - small, fast and portable, and you don’t have to vent them out of a window.

philips.co.uk/healthcare/pr...

[Mooka in reply to eleanordigby]

Thank you. I will look into that. Not sure it will be easy to get my GP to change the prescription 😱. It’s worth a try.

[Collienut]

I've nebulised Colomycin twice, both times for around two years. After three negative sputum samples for pseudomonas I was taken off it. The first time was a two year break, and this time has been two years and still negative sputum tests (I'm also on Azithromycin).

I did have some broncospasm with it but not enough to put me off taking it.

[woodcarver999]

Hi

I have been on Neb Colomycin for about 18months so far. The original dosage was twice a day for 5 days but my body couldn't stand that and I now use once per day over 10 days wih a four week gap beween sessions. I am told that its sensitive to Pseudomonas but I have had one exacerbaton where I to my emergency pack of ciprofloxacin. Side effects; well i have a tight chest for about three days after completeing the course and my Oxygen stats drop into the eighties during that period.

Because I started during lockdown cannot say for sure why only two exacerbations in three years; is it the Colomycin or the fact that everybody else was being hygenic?

In the absense of a cure I must carry on with the nebuliser.

PS my nebuliser was replaced by Phillips , has anyone else had probles with their Respironics department?

[Daisyrob]

I’ve been on nebulised colomycin for 4 years x2 per day at first I was a bit wheezy but after a few weeks this calmed down. Also using carbocistene 750mg x3 a day helps keep the pseudomonas in check and Ciprofloxacin x750mg emergency antibiotic for flair ups. Hope the trial goes well for you.

[Phill1]

Hi. I’ll be interested to know how you get on

I had recently been prescribed neb colomycin…..Tried it 3 times only and unfortunately had to come off it as I got oral thrush. I’m taking nystatin for it at the moment but not sure I want to go on back on colomycin again as I think I may be sensitive to bouts of OT and it’s not pleasant😳

Waiting to hear from consultant.. (who had said I could have an ineb with promixin once established that colo is ok for me…)

Plus I was told ( after) that you should rinse your mouth out after each session …so please make sure you do that at least

Be interesting to know if anyone else has suffered from this due to nebulising ?

Good luck.. it seems to work for many x