Pseudomonas infection

[falcon68]

Morning all just wanted to ask , anyone who has had a pseudomonas infection and recovered from it? I have been put on Colomycin inhaled medication for a year..to keep the the bugs at bay. Does this mean that if l come off Colomycin that l will be really ill again?

[peege]

Others will come on who have experience of pseudomonas hopefully. To me it looks as though you may have had a bad case so they've given it both barrels to get the level down. Unfortunately, pseudomonas is one stubborn bug that can colonise lungs, they need to get it down so that it can be managed for life. Many people live with it without it too much trouble. I believe it pops up when you &/or your system is low so once they take you off colomycin you must look after yourself.

Until you get some more useful replies you could write pseudomonas in the search bar above to read up as much as possible about it. Good luck. P

[peege in reply to peege]

I forgot about the Related Posts section to the right of your post. There's lots of info there.

[falcon68 in reply to peege]

Thanks peege for your reply. I have heard from a couple of people on this site. It's reassuring to know others are coping with the same thing.

[hertsguy]

Hi falcon68, I have severe emphysema and Bronchiectasis and have had a few bouts of pseudomonas over the past years. Each time, a course of whichever antibiotics the doc proscribes (maybe some steroids too) have been enough to get rid of it. I hope this helps to reassure you!! Get better soon. Good luck.

[falcon68 in reply to hertsguy]

Thanks hertsguy , the consultant did try a strong antibiotic in tablet form but it didn't work. So they decided Colomycin was the best course of action.

[Mooka]

Pseudomonas hides in your lungs and comes out to play when you don’t want it to. I’ve been on nebulised colomycin for over six years but I am immunocompromised so I can’t fight it much myself. It will be down to you and your consultant whether you have a break from it. I hope it works out well for you.

[falcon68 in reply to Mooka]

Thanks Mooka , l think the worse thing is breathlessness is worse than normal especially in the morning. It gets better as the day goes on. I also get really tired at times.

[Mooka]

I had iv antibiotics before I started on the nebuliser so I felt a lot better after them. I was told colomycin keeps the pseudomonas numbers down but it’s best to kill it off to start with. Personally I’ve struggled with the high humidity lately which has affected my breathing. I hope you start to feel better soon.

[MoyB]

I had a positive test for pseudomonas. My own GP was away so another reviewed my notes. He told me that I didn't need to be on any medication for it.

Fast forward a month and I was still not right. I had my annual review with my resp consultant. From my notes, he found I had had TWO positive tests for pseudo. He said with raised eyebrows, 'I expect you were told you didn't need any treatment.' I confirmed this. He then put me onto an antibiotic (can't remember the name off hand - it's the one that can affect the achiles tendon) and the next sputum sample tested clear of pseudos.

He was rather unhappy that I had not been treated sooner as I have Bronchiectasis. However, since having those antibiotics I have not looked back.

Different people receive different treatments accross the country. Also, I think it must depend on how deepseated the infection is and how long you've had it as I believe it can be hard to eradicate. My consultant told me that it's not so much a case of clearing it completely as getting the numbers down to manageable levels.

I understand your question is will you become ill if you come off the Colomycin. I think only time will tell, but I would hope if the bugs have been kicked into touch by then, your immune system will have had time to recover and with regular monitoring, perhaps the little blighters will realise that you're going to win, not them!

xx Moy

[Shonkie]

I have recently had pseudomonas for a year or more. When I finally started treatment it improved within days and I feel much better with almost no congestion and clearer breathing. I am on it for 6 months so it worked for me even though I have a range of health stuff.

[falcon68 in reply to Shonkie]

So glad to hear you are feeling much better. I think l have had it since the beginning of the year..l had a course of antibiotics from my doctor felt a bit better. Then a month later felt bad again and sent in another sputum sample given another course and then sent in another sputum sample then my consultant said colomycin had be nebulised for at least a year. Praying it will sort it out...l was also told it's a matter of keeping the bugs at bay and not particularly eradicating them...so l presume once you have it you have to live with it?

[Elliekeo]

Hi Falcon, I suffer from emphysema and bronchiectasis and i have big problems with pseudomonas and have just been put on colomycin nebs to run along side Azithromycin oral antibiotics. I have just come home from hospital after a 3 week admission because I needed 14 days of IV antibiotics due to lung infections every month. I am on this medication for the foreseeable future, at least a year and if it works for me then I will be staying on it or reducing it slightly. I hope it works for you too. How many times a day do you take the colomycin nebs ? Do you suffer from thrush from all the nebs ? I have it terrible even with washing my mouth out and taking nystatin 😊

[falcon68 in reply to Elliekeo]

Hi Elliekeo l take it twice a day morning and evening. I also have oral thrush although not so bad since l started using Nystan. I have Bronchiectasis and was told that we are very prone to infections, which isn't great. I am also ib oxygen therapy 16 hrs a day. I have it on all night which is about 11 hrs and then make up the rest during the day. I find since being diagnosed in 2022 that my life has been greatly restricted by it. Can't do alot of things l used to do.

[Elliekeo in reply to falcon68]

It does restrict you from doing a lot of things, I’m exactly the same as you but I don’t have oxygen, I’m holding my own really well at the moment so I’m praying that continues because my mobility is awful as it is. Things I used to do so easily are now so difficult for me which makes me feel so low and really sad on some days.,I have the colomycin twice a day too. I hope we can be friends and help each other to get through this. Sending you lots of hugs and positive vibes xxx

[falcon68 in reply to Elliekeo]

Thank you Elliekeo it would be lovely to keep in touch and share our journey. So many people don't understand how difficult life is for us with lung conditions. I have 2 daughters who are lovely but really don't know how to relate to me now, since l have become chronically ill. One is married with 3 children so life is pretty hectic for her and the other one is busy with work and her dog whom she idolises. I don't see them very regularly which is hard. I lost my husband in 2020 to stage 4 lung cancer and life is not the same without him for support.

[alcgb]

I had pseudomonas last year & was put on oral ciprofloxacin - I took it for two weeks & was no better so was prescribed it for a further two weeks with no success. I then had a two week course of IV antibiotics - Tazocin, which worked & I have had no recurrence since.

[PAP48]

I have had bronchiectasis and asthma for years, I'm now 75! Pseudomonas can be colonised, which I have. Medication is needed when the numbers are relatively high and I take Colomycin through a nebuliser. I haven't needed Colomycin for 6 months now but I probably will at some point in the future. I have had IV years ago but my consultant now prefers me to have Colomycin to knock it on its head! Are you under a consultant? It's a good idea to have respiratory expertise for bronchiectasis, so the correct drug can be prescribed for your particular infection. Generic antibiotics don't work on the brochiectasis type bugs. Hope this helps.

[falcon68 in reply to PAP48]

Hi Pap48 yes l am under a consultant for my Bronchiectasis and she prescribed the Nebulised Colomycin, which l need to use for at least a year.What does colonised mean?

[PAP48 in reply to falcon68]

I’m glad you’re under a consultant. Colonised is when the infection doesn’t go completely but it’s only when the infection levels increase that medication is needed, in my case Colomycin but others may have oral antibiotics or IV. Colomycin usually has to be taken for prolonged periods. Hope this helps.

[falcon68 in reply to PAP48]

Well mine as probably colonised as well as l had had 2 lots of ciprofloxain and it didn't move it l. That's when they decided to put me on Colomycin.

[PAP48]

Fingers crossed the Colomycin helps.

[ladyn]

I have never heard of it before