cursed Pseudomonas again

[Morrison10]

I was born with PCD and as got older more prone to infections. I keep own antibiotics, take them as necessary but sometimes an infection is more resistant, is happening again now, have been on Ciprofloxacin for several weeks, changed back to regular daily Azithromycin two weeks ago but latest sputum test shows have pseudomonas. Will tell my good respiratory consultant and see what she recommends and can do. Not a Happy New Year. X

[Hidden]

I didn't reply to your post when you thought that you had defeated pseudomonas because I didn't want to spoil your happiness with the facts about pseudo. Once we are colonised with pseudo it is always lurking there. If we have had a good dose of abs it can fail to show up on a lab test because the numbers have reduced to a point where normal tests do not pick it up. But unfortunately it soon starts partying again and shows up.The real test is how do you feel?

I have lived with pseudomonas since 1986. I keep the numbers down by nebulising tiotropium salbutamol and saline, together with scrupulous lung clearance. It is always showing on my regular tests but doesn't make me feel ill. If I get changes which mean worse sputum or I feel poorly I take cipro and have an arrangement whereby if that doesn't work after 7 days I can have IV at home but I haven't had to do this thank goodness.

Azithromycin is not effective against pseudo but is a good anti inflammatory.

I think that you should discuss this with your consultant. If the pseudo is making you poorly they could knock it on the head with 2 weeks IV and then you could go on to a long term nebulised antibiotic such as colistin to keep the numbers down. Cipro is a horrible drug and very debilitating to take so much of it. There is a better way. If your consultant is a bronch specialist they should know about these different treatments. If not, find yourself a true bronch expert. At present you are going around in circles and that spiral needs to be broken for the sake of your ongoing health. The PCD makes no difference to this. Many people with bronch have it. Some picked up in childhood tests, some in tests since diagnosis. My consultant who is co chairman of the British Thoracic society takes the view that in long term bronchs it is not worth testing for it because the test is very expensive and the treatment is the same whether you know you have it or not. At least you know that you have it. I don't but as my bronch started age 18 months after bouts of pneumonia it is highly likely.

Sorry for the long answer but I felt that it would benefit you. Good luck. I hope that you get on to a good treatment regime to keep the pesky pseudo in its place.

[sassy59 in reply to Hidden]

A great, concise and very informative reply dear Littlepom. You’re a star. Xxx❤️😘

[Morrison10 in reply to Hidden]

Thanks for your informative reply. I’m going hopefully to speak to my respiratory consultant today. I had a 14 day IV course at home about 18 months ago, she may suggest another. Will update you, have a good day, kind regards Jean xx

[Hidden in reply to Morrison10]

Great I hope that you get a good regime sorted x

[sassy59]

A wonderful reply from Littlepom Jean so I just want to say that I hope things improve for you. Your respiratory consultant should be able to advise. Xxx🤗❤️

[peege]

Arrrgh no! Thinking of you and wishing the abs get them under control again 🙏

[Donald_1931]

Oh dear, one step back it seems, Jean, sorry about that. Don't be downhearted at least you are experienced at dealing with your old enemy. Don & Smudge xx

[Morrison10 in reply to Donald_1931]

Thanks Don, hope you’re doing well, enjoying life. Jean and M xx

[JJ_7]

Sorry to hear. Lets hope you are the up again soon. xxx 💗

[Alberta56]

So sorry to hear the pseudomonas is rearing its/ their ugly head(s) again. I hope your consultant will come up with ideas to put them in their place. Very disconcerting to learn that you can never totally get rid of the nasty little beasts. Love to you and Morrison. xxx

[Morrison10 in reply to Alberta56]

Thanks for love and good wishes. Hope to speak to my consultant, have telephone appointment Friday 2nd Feb to discuss my PCD. I’m on Ciprofloxacin, thought to be best antibiotic for me, but she may put me on same IV treatment had about 17 months ago at home to clear the pseudo. Will keep everyone informed. Love from Morrison and Jean xxx

[Redrum46]

hope you get sorted I’m similar to you in age and condition had horrendous @time since early jan

[Izb1]

Sorry to hear that you are battling this Jean and hope your consultant can come up with a plan x

[PAP48]

I, too, am colonised with the dreaded Pseudomonas and have been for many years. As others have said, lung clearance is your best friend to keep it at bay but in my own experience, it does pop up when it feels like it. I take Azithromycin 3 times a week, saline nebs etc. but when infected I have nebulised Colomycin at home. It's a long haul, for me minimum 45 days and quite often longer on this drug but it doesn't give me any side effects and is kinder than tablets as it goes direct into the lungs. Good luck and hope things improve for you.