Pseudomonas and Colomycin nebs

[LottieB36]

Hi, I just wondered how long you’re usually prescribed nebulised Colomycin for? I had 3 month course last year, then it was stopped, but due to repeated infections I was prescribed another course but for 6 months this time (or until my next review)? I’ve had a review today and although I’ve not had as many infections, I had bronchitis which lasted about 6 weeks 🙈 eventually had antibiotics but was left for a number of weeks as GP said it was viral and would just have to “put up with it”! I let my consultant know that I’m still coughing up pale green mucus, which is very thick and sticky which he says will be due to inflammation in my lower airways, is it worth getting a sample tested to make sure it’s not an infection brewing? I’m also a brittle asthmatic so on lots of meds, and have recently had to switch from azithromycin to doxycycline and wondered if this was perhaps the reason for increase in mucus? Thanks 😊

[Mooka]

Hi Lottie I was prescribed colomycin nebs five years ago and I’m still on them. I have Bronchiectasis and had pseudomonas. I’m also immune suppressed due to my treatment for vasculitis so have it to stop the pseudomonas partying again. I’m told to always get my sputum tested when it’s green. Not sure that is much help to you. My problems are managed by hospital consultants and GP has to follow what they say.

[Lapis5 in reply to Mooka]

I have Primary Immune disorder too and just started back on. monthly gammagobulin infusions and hopefully this will help. Have u had these before, the infusions?

[Mooka in reply to Lapis5]

I had three weekly infusions for 6 months and was then moved onto self injections weekly. I have immunoglobulin which I assume is the same. It has helped greatly along with the colomycin. I hope they help you.

[Lapis5 in reply to Mooka]

My pulmonologist can't get the Colistin approved by Medicare.. who paid for yours.

3 weekly infusions of what? of gammagobulin? how many mgs each time.. this time this dr is going by my weight.. so only 20mg per mo.. before it was 40 and more often.So do u still have PSeudomonus in your lungs?

[Mooka in reply to Lapis5]

When I was on infusions it was privigen immunoglobulin. The dose was dependant on my weight. I now have hizentra immunoglobulin the dose is decided by my immunoglobulin blood results. Happily my dose is reducing. I’ve only had one infection since being on both the colomycin and immunoglobulin. That turned into pneumonia so no infections from pseudomonas but I understand it lurks in corners waiting to come out and party. I have a repeat prescription from my GP for the colomycin. Had that not worked for me they were going to try gentamicin. Perhaps your doc can get that. Here it is the immunoglobulin that is very expensive and has to be approved.

[Lapis5 in reply to Mooka]

My immune base line blood. test is normal but all the subclasses are low indicating no immune system basically. I have a new Allergist who rx's teh gamma and as i said he does it be weight. I will ask him for Hizantra (sp). When u did gteh Colomycin did u do it in a nebulzier and did u do it after u had used saline in the nebulizer??That is the way they wanbt me to to it, but start on Tobramycin today for 5 weeks and then Colomycin if she can finally get it. Heard bad things about Gentramicin, deafness et.

What were your side effects fron Colomyycin.? So now ui feel pretty good, ??No green mucas, burt do u stillhave thick clear to yellow mucas and do u use a ocialllating vest like I do, Aflo is mine? What state r u in,Do u have both a pulm onary dr. and an infectious disease dr..?

[Mooka in reply to Lapis5]

My care is at at specialist centre for vasculitis. I see a vasculitis consultant, respiratory doctor who specialises in vasculitis and immunology. I also see an ENT doctor. I had cipro for months when the pseudomonas was found during a sinus op but that stopped working for me. My respiratory doctor asked a respiratory doctor that specialises in Bronchiectasis at my local hospital to help when my infections were bad. I had two weeks of two different antibiotics via iv which I did at home. I then went onto the colomycin which is nebulised with saline. My immunologist added in salbutamol as I was getting chest pains whilst using the nebuliser. I’ve been on this regime for over five years and have been mostly well apart from one bout of pneumonia. I am very lucky in my care. I hope you can get the colomycin and it works for you.

[Lapis5 in reply to Mooka]

I had Cipro for many mos too. So how many hrs a day do u think u spend on the nebulizer????

[Mooka in reply to Lapis5]

About 1/2 hour in the morning as I take budesnide as well and then 15 - 20 mins in the afternoon. Plus time for preparing and cleaning. Also a pain to go away as have to take nebuliser etc. better than feeling awful all the time though.

[Lapis5]

I have Pseudomonas bad and colonized and on 3rd PIK Iv w Ceftazine.. 3 x in 7 mos

Tomnrrow i start Tobramycin for 5 weeks and no antibiotic, so far dr. cannot get Colistin (sp) covered so far by Medicare as she wants me on that too for a while . Have u taken Cipro for the green mucas and or Iv antibiotics?

[Lapis5]

i havre not started it dur to Medicare not paying so going on Toby as of today. Did Medicare apy for your meds?