the dreaded pseudomonas again

[johnhawk]

Hi everybody, Still 83 and stil have pseudo, it seems it has now colonised me, I have upto date had 3 lots of iv ab's (piperacillin+tazobactam but It still remains in me. I am going to hostpital tomorrow for a nebuliser and colomycin I would like hear of your experience with colomycin, as I always seem to get side effects with most medication.

[Hidden]

Hi johnhawk, lots of us are colonised with pseudomonas. I have been so since 1986. It never actually goes away but can lurk in numbers which labs can’t pick up. The secret is not to stress about trying to eradicate it but to take steps to keep the numbers low enough so that you can live a full life. Long term nebulising of antibiotics can be very useful. I have nebulised various drugs, ceftazidime being the most successful. Unfortunately my lungs can’t tolerate colomycin and I get breathless after about two weeks on it. Many do very well on it though.

The most important thing is to clear those lungs thoroughly every day. This deprives the pseudo of the warm wet pools that it likes to party in.

After Christmas I decided to have a rest from everything so am just nebbing 0.9% saline twice each day. The pseudo levels are no higher and when I saw her last month my con said that mychest sounded clearer than it had been for years. With bronch there is no knowing. I have had it all of my life and am nearly 69 now. Good luck. I hope that the colomycin works for you.

[johnhawk in reply to Hidden]

Thanks for reply, it's fingers crossed now I just want to feel good enough to drive that will do for me. Cipro din't agree with me eiither. Keep well John.

[angie26 in reply to Hidden]

Interested to hear about nebulising Saline, unfortunately I don't tolerate meds, I have tried Colomycin and others to no avail. What does Saline do? Thanks

Angie

[Hidden in reply to angie26]

Saline in various strengths is generally used to thin down mucus so that it can be coughed out. However, there is anecdotal evidence that it can also keep pseudomonas down. About twenty years ago a clever registrar who is now a cf consultant told me that pseudomonas hates saline but because it is cheap drug companies had never financed research. I took part in a 6 month study for dnase for cf. luckily for me ( dnase made some bronchs very ill) I was nebulising saline and not the drug. The pseudomonas levels in my lungs dropped dramatically.

I actually think that it is a kind of roundabout, using oral, IV, nebbed drugs and in my case saline as and when. I don’t know how long it will be before I get an exacerbation but as long as the saline is showing pseudo levels as low as my nebbed ceftazidime I will keep on.

Some hospitals are currently running trials of saline and carbocysteine to look at the effects. A long time coming.

[angie26 in reply to Hidden]

Very interesting thank you

[Hidden]

It's a long time since I nebbed Colymicin, but I got on well with it. As Missyscarlet explained, you can never totally get rid of Pseudomonas but the numbers can be kept low enough so we can learn to live with it. I was supposed to take Cipro with it, bu after a couple of days I got Tendonitis and couldn't walk for a while. I can no longer have this. It's on my list of allergies.

[johnhawk in reply to Hidden]

Thanks for reponse, I too had a bad experience with Cipro. Stay well John

[angie26 in reply to Hidden]

I had tendonitis in hospital after being given Cipro, when i told them it was the drug they rubbished me beyond belief, I couldn't walk either for weeks, I put the meds in the bin!!!

[Hidden in reply to angie26]

Oh dear they are beyond terrible. Tendonitis is a well known side effect of cipro although luckily I have escaped it. If only the FDA would licence nebbed cipro. There are a few of us on here who took part in the trials and it really worked.

[Neville33 in reply to Hidden]

Were you alternating months with Colistin and cipro

[Caspiana]

Hello johnhawk . I can't help with your question but just wanted to say, I hope you feel better very soon. xx 🍀🌿

[johnhawk in reply to Caspiana]

Thanks for the kind thought Caspiana, thats a lovely name, and you sound like a lovely person, God Bless John.

[Hidden]

Hello Johnhawk, hoping you feel better soon take care. Majt xx

[johnhawk in reply to Hidden]

Thanks for the kind thought Buddy. Stay well John.

[HungryHufflepuff]

I guess it's today you're going to the hospital. Hoping the nebs help things to improve. Thinking of you 👍

[Izb1]

Hi John, hope the hospital get this under control for you and you feel better soon, thinking of you. Irene x

[bobbysgirl1]

My husband had pseudonomas and my understanding is that once you have it you never get rid of it. He was using Colomycin through a nebuliser, apparently to damp it down. He had to be assessed in hospital for this treatment. After about 2 weeks he had to stop using it as his chest was tightening. So for him it wasn't helpful. I hope you have success

[Mooka]

Hi john I am currently nebulising colomycin for pseudomonas. I had two weeks of tazacin and ceftazine (excuse spelling) iv abx as consultant wanted to hit it hard then went on to the nebuliser. I struggled at first with tight chest and coughing but my immunologist added in salbutamol and this helped greatly. I haven’t had any more pseudomonas infections just a bout of pneumonia. Good luck I hope you get on okay with it.

[cofdrop-UK]

I hope the colomycin keeps the pseudo controlled for you johnhawk. I was fine at assessment but gradually became so breathless that doc sent me into hospital. Please note though that I am intolerant to so many medications, incuding nebulised Tobra, that it would be unwise to go by my experiance. Many people find nebulising Col very beneficial to them. You can only give it a go and I sincerely hope it works well for you.

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