Pseudomonas

[Liberty43]

Having spent 10 days in hospital for iv antibiotics, l find myself in same position just a week after discharge. As there is no oral ab suitable for me l will need to be readmitted! Apparently my sample was resistant to cipro. I can't see a way forward now and my anxiety is in full swing. I do have a specialist but this is my current position. Can anyone give advice how to move forward as l feel l am at the end of the road. I am 81 but don't look or feel it most of the time. The doctors in hospital thought l was in early 60s!!

Any advice on moving forward please?

[Keep-positive]

Hi Liberty , sorry to hear you've been having a difficult time.I was like you , needing to go into hospital frequently for two weeks intravenous antibiotics, I was told I was too young for hospital at home.

I am now on nebulised Colomycin, it's time consuming but way better than being in hospital.

Hope you find a suitable alternative 🤞

[Liberty43 in reply to Keep-positive]

Thank you for that information. I really must contact my consultant but he always wants me to go in. I have a nebuliser and have had colomycin in the past. I hate having to take up a bed when l could be at home.

[Keep-positive in reply to Liberty43]

Oh if you've had Colomycin in the past Liberty your consultant obviously has a reason for you needing to go into hospital. Even if he could arrange for you to have hospital at home.I understand your frustration, i feel were don't get the same care in hospital like we did years ago , the staff are ran off their feet 😢

Good luck !

Hope you are well enough to have a nice Christmas 🎄 xx

[Liberty43 in reply to Keep-positive]

Thank you for reply and hope that you also have a nice Christmas.

[Bronchi1]

Sorry to read that. I hope they can find some combination or alternative. Never give up hope. Good luck.

[Lfcpremier]

Hi Liberty,So empathise. Im 69 but feel about 90 right now!

Like the last reply, i was put on nebbed colomycin to control pseudo. Seemed to be working with less mucus, coughing, better Sats despite 2 episodes of vomiting & terrible silent reflux.

Now i have a flu like bug shivery, sickly, weak, thick green mucus. So difficult!!

Anyone have experience of phages? They seem the way to go.

Good luck Liberty.🍀🤞X

[LMEI]

Hi Liberty. Pseudomonas is a little devil. Difficult to get rid of. I used to have cipro but then that caused tendinitis so its always IV'S now.Some years are better than others. Last year was a bad year with 5 or 6 lots of IV'S and admission to Hospital.

I have been nebulising with Colomycin for well over 10 years now.

I had my last lot of IV'S in March of this year, and touch wood we are on an even keel. I was put on Azithromycin, one tablet three times a week. I feel sure this has helped.

Do try to keep your chest clear as much as possible. I do active cycle of breathing twice a day. It is all time consuming but if it keeps you out of Hospital, it is worth it.

Make sure you are up to date with flu and covid jabs. I even had a shingles jab, as I had this in the summer (very painful).

Take care and stay safe.

Linda

[ScottieAl]

Hi Liberty,

So sorry you are feeling so unwell. I am colonised with Pseudomonas as well, after the flare up has been treated you could ask to try the nebulised colomycin. As other people said it can be time consuming but is really good to keep this bug at bay and hopefully reduce the amount of admission to hospital.

All the best

[Liberty43 in reply to ScottieAl]

Thank you. Never given any alternative but will have to push more.

[Mooka]

I was where you are 7 years ago. I had two weeks of iv antibiotics which I did at home and then was put on nebulised colomycin. I still nebulise twice a day. It’s a pain but the alternative is worse. I was told you need the ivs first as colomycin is just to keep the pseudomonas numbers down. Do ask about home ivs. Some have a nurse come in and do it but it’s easier and more liberating to do yourself. Have a look at the lung conditions thread on HU there’s plenty on there that have been down the same route. BTW I also take a prophylactic antibiotic three times a week. Best wishes to you - Christmas was always my favourite time to have an infection and it’s so miserable.

[Liberty43 in reply to Mooka]

Thank you so much for your response. I will have to be admitted after Christmas. I hate taking up a bed for ivs but no alternative here. Hard to believe l had so many ivs and still heavy pseudomonas but that's where l am. If l get worse l will have to go in but for the moment my anxiety is better so l will keep going as long as l can. I am pleased that you are over that though. Have a lovely Christmas. I will ask consultant about colomycin as that sounds promising.

[Mooka]

I hope you don’t get any worse before you go in. If you don’t get on with colomycin there’s other antibiotics you can nebulise. I’d definitely ask your doctor about a prophylactic antibiotic too. Most take azithromycin. Thank you for your good wishes. I hope you can manage to have a good Xmas too. You will get through this with the right treatment.

[Liberty43 in reply to Mooka]

I do take azithromycin 3 times a week and has been great until now. I will speak to consultant but he always wants me to go in! I don't alert him if l am feeling OK, if not, l have to. Thanks again.

[Ozzie3]

I had a sputum sample showing pseudomonas and my specialists attitude was that if I felt well there was no justification for putting me through a hospital stay and IV antibiotics. That was a couple of years ago. Once or twice since then my sputum has grown Pseudomonas, but as I have been well at the time nothing was done.

I inhale nebulised hypertonic saline twice daily and go for walks most days. I feel very well.

My specialist says that you should treat the bugs that grown in your sputum while you feel well as passengers on a train - they get on, have a ride, and get off. If you get sick, that’s a different story, then you need an antibiotic to which the bug is sensitive.