But been on for two weeks now and feel so much worse. Been taken off of it my breathing is no where near as bad as it was. Within a day or so. Not sure what they will do now also on steroids. Had pseudomonas infections on and off since last October. Always put on ciprofloxin it then goes then with a couple of weeks it’s back with a vengeance. Hence why I was put in the nebuliser antibiotic. Any ideas anyone what they might do when I see the air team tomorrow. Thanks Hope your all coping alright in this heat. Stay well x
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patj
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Hi pat. I’ve been nebulising colomycin for years, so far I’m ok on it. Didn’t you have a colomycin challenge test at the hospital, to check your lungs could tolerate it? Mind you, some people “pass” that & then find over following weeks it’s making them wheezy. Have you tried nebulising ventolin before colomycin? That helps a lot.
An alternative to colomycin is tobramycin, taken alternate months, but I can’t say what the team might suggest. I hope you get on ok
Yes I did have a test at the hospital I was ok then. Thanks for your help.
Hi patj
I agree with Hanne62
I have tried nebulising colomycin on two occasions and after about ten days I become very wheezy and the mucus becomes very sticky. I cannot tolerate tobramycin either but have nebulised ceftazidime succesfully for years. Many consultants do not realise that they can prescribe this one. It has to be supplied by the hospital.
As you are having problems with the pseudo a course of IV would probably be better, to knock it on the head before going on to nebulised abs to keep the numbers low. Nebulised antibiotics are not very efficient at dealing with a bad pseudo exacerbation in the first instance but great for maintenance. It is difficult at present to be admitted for this but your area may have a home IV service. You need to talk to your consultant through their secretary as only they can make the decision.
I agree with Hanne and Littlepom. You might want to speak to your consultant or team about a course of IVs to slap the pseudo down.
Definitely essential I would have thought to either inhale or nebulise a bronchodilator before nebulising any ab, especially for those who like Hanne and myself have asthma too. They usually do this at an assessment.
The next nebbed ab they usually turn to is Tobramycin.
Personally I was fine at assessment with both Colomycin and Tobramycin. After gradually becoming over a couple of weeks so breathless with Col I couldn’t put a sentence together, my GP sent for an ambulance. I had a similar experience with Tobramycin but to a much lesser extent. Saying that many bronchs I know have found nebulising abs to be very beneficial (we are all different).
My Prof said you can nebulise a number of abs but it was, over a long period of time, that as I am also intolerant to many oral abs too, (including Cipro) the best way to control the pseudo in my ‘manky’ lungs was to have maintenance Ivs, which is not something they do very often these days for BE. I have a permanent midline in (which should have been changed to a port last April but delayed of course with the pandemic). If the ab IV drugs are licenced for home use and self administered I do them at home, so the midline is so beneficial as I can crack on. Some IV abs are licenced for a community team to come in but luckily I have not needed them.
I do have either doxy or co-amox for the other pests - HI, moraxella, strep p etc.
You will have options and I hope today goes well. I also hope you can contact your consultant soon.
Thank you I’m so hoping I will get something done today. I just seem to go round & round in circles always at the same place. Still having a infection. 😫😫
You have probably had appointment by now but just wanted to give my two pence worth!
Like you I passed colomycin test then about week ten days got wheezy and couldn’t breathe (reacting to the drug)
Also like you have had pseudonomas on and off for two weeks.
What ended up working for me was a ten day IV treatment of two antibiotics: tobramycin and ceftazimide. The tobramycin will give you diarrhoea mind but strong and worked and then was on gentamicin nebuliser for 3 months. I see Professor Wilson and Professor Loebinger at Royal Brompton so under very good care.
Good luck with appointment and let us know how it goes..(if you want!)
Air team nurse phoned me. I said how much better I was without taking colomycin. She said do not take it any more, she would get hold off my consultant to see what she wants me to do next. Doubt I will here anything till Monday.
Still got infection obviously but at least the steroids are helping but still need to get rid of this blinking infection. Keep you updated.
Do mention what I wrote above. Especially if you have email address of nurse you spoke to. As I know how hard it is with pseudonomas. It’s a nasty one to get rid of. Steroids will help.
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