Pseudomonas treatment

[Lfcpremier]

Has anyone taken chloramphenicol antibiotic for Pseudomonas.

The professor I see gave me a course of them & steroids to take with me when I go on holiday to Canada.

I have used ciprofloxacin but find I can’t tolerate it anymore.

[Izb1]

Never heard of them Lcf but hope they will be work better for you then cipro. Enjoy your holiday to Canada , how long will you be there for? I am sure you must be excited and hope you have a fab time x

[Hidden]

Sorry to say that this was the first antibiotic that I was put on in the 1950s. It is very toxic and when researching it, it is not effective against pdeudomonas. I do wonder why your professor chose to give you this when there are other options. 🤷‍♀️

[Hidden]

With the caveat that I’m not remotely medically qualified. My understanding is that pseudo is often innately very resistant to chloramphenicol. However, alongside doxycycline, it is still classed as a drug to be considered when cipro is not an option for whatever reason. When discussing it with the child’s consultant a couple of years ago, I was told that chloramphenicol is extremely expensive by oral antibiotic standards, and also quite heavy on the kidneys: because resistance to it is commonplace, the hospital she’s under don’t prescribe it for pseudo (in paeds or adults) unless they’re desperate. Under the circumstances, and with being abroad, I’d say it’s definitely better than taking nothing with you as cover, but just like our experience of using doxy for pseudo, it may not be hugely effective. Not being able to take cipro (or proven resistance, as is the situation we’re in) is a real pain in the bum because it is the only genuinely effective oral option.

I’m assuming that you have a chronic infection: are you taking antipseudomonal nebs e.g. colomycin, to suppress the bacteria?

[YummyBear]

Could I ask why you would take these meds? How did you get tested for pseudomonas. I have only just come across that bacteria through searching online, as I have been struggling with chest discomfort after having Shingles but I also have mild bronchiectasis. Just wondered if I should mention pseudomonas to GP. She requested an xray over 2 weeks ago but not heard a word. Many thanks

[Lfcpremier]

Many thanks for all replies.Yummy bear.. I often put sputum samples in to see what infection is present, if any.

Several in March & May showed up pseudomonas(scant in the last one). A chest X-ray would not identify a particular bug. Ask your GP if can submit a sample.

Many thanks Charlie. I had a good chat with the Prof yesterday. He knows I do not react well to antibiotics but as my hol for sons wedding is only 3weeks away, agrees that I don't want to take anything to destabilise before I go. 🤞I remain okish.

I mentioned inhaled colomycin, my preferred option. He said that I would be progressing to another stage & would need a trial in hospital. Before that I think it would be intravenous antibiotics.

I so wish I was more tolerant of cipro:must be difficult for your daughter. Hope she is doing OK & one of these new amazing drugs for CF will be available for her very soon.

Thanks all for your good wishes.

Linda x

[Hidden in reply to Lfcpremier]

So…you keep culturing pseudo, they can’t give you cipro, but they haven’t given you IVs, and although from your post it sounds like you’ve been growing it on and off for quite some time (years?), you’re not on any inhaled antibiotic therapy? I have to be honest and say it doesn’t sound like you’re getting particularly great care to me, Linda, professor or not. My understanding is that if the pseudo is showing up regularly, regardless of whether it’s making you symptomatic at the time, it needs managing. And if it is making you symptomatic, you’re probably going to need to have IVs to get it under control before adding in colomycin, because nebs are maintenance therapy to minimise chronic infections once they’ve been treated, not treatment for an active infection that’s causing symptoms. In any event, though, I really hope you enjoy the trip and the wedding. Fingers firmly crossed for staying well throughout.

Bod is doing ok, thank you for thinking of her. She’s on Kaftrio, taking it off licence: it has stabilised her lung function decline, but we haven’t seen any of the other headline results like gaining back fev1 or requiring less treatment. The pseudo and exacerbations remain a frequent problem, and the resistance is increasingly problematic: she had a fortnight of IVs in Feb that didn’t get it under control, three weeks in May with no joy, and I suspect she’s headed for another 2 or 3 weeks before too long as a result.

[Lfcpremier in reply to Hidden]

Thanks Charlie.Tbh I don’t know how long I have had pseudo for.I did have it in 2012 but got rid ,then 2020 & again ciprofloxacin dealt with it but had severe side effects.My tolerance of antibis has grown less & less, even doxy for 10 days I had to stop in November.I take azithromycin 3x weekly & wonder if that has caused this to happen.

The prof did suggest intravenous in March but then I got covid & had another health issue.

I just hope I can stay ok, at least until my Canadian holiday is over.

Glad that Bod is on the Kaftrio ,really hope her condition stabilises over time & hopefully new drugs are on the horizon in the not so distant future.

[cofdrop-UK in reply to Lfcpremier]

I don’t understand why they didn’t take you into hospital for IVs because you had covid. I usually do them at home but because One of our team of cons had me down for home IVs when I felt Unwell enough because of pseudo growth, once I had covid they were wise enough to understand I was too unwell to do them myself and do all the other stuff you have to do at home and I was in 5* within the hour. Can’t help but feel you are being generally short changed. If it’s a holiday period then I find and clinicians agree to take Doxy as a stopgap until IVs can be started and I find it can dampen it down a little. I hope the temporary meds work well and you enjoy your hols.

Cxx

[Lapis5]

Pseudomonas is colonized in my lungs for over a year now. Getting ready for 3rd Pilk line iv at home for 3 weeks w a Cephlaporin drug. Each time i do this, it comes right back after a couple of weeks. I use the AFFLo vest and saline in neb 2x day, and on Levoxycillin (sp) for 2-3 mos now as Cipro did not work . I see NO end to this. Tobramycin made me cough too much and so did Cayston. Let me know how u r now.

[Lfcpremier in reply to Lapis5]

Hi Lapis5. I am much the same. Irritating mucus but ok in self mostly.Hope you feel better soon!

[Lapis5 in reply to Lfcpremier]

So 3rd round of Iv Cefadine did not get rid of Pseudomonas. Yes it is colonized but need it be become inactive at least for awhile but no! add nebed Toby and so far non stop flooding mucas all night and no sleep and culure is green so am very infected. My Pul dr is out for a week again at Ucd and hoping someone calls me today and calls in 750 Cipro at least. 3 rounds of IV in 7 mos..Something is wrong w this picture! Readabout lots of other drugs today on this site and wondering why haven't they been rx for me? I do saline in nebw Vest twice a day and. clear lungs in warm shower as that seems to bne the only way I can clear, then Toby. The whole thing takes aboutr 2.5 hrs twice a day exhausting plus steriizing etc. Started back on infused Gammagobulin monthly for Primary Immune Disorder which Medicare had cut me off of for 5 yrs! hoping it will boost my immune system but will take a longtime. Have u done Toby and how did it affect u and amni doing it thye right way?Thinking of quitting it today due to no sleep. I am in sacramento, ca

[cofdrop-UK]

This drug has been around since I was a baby 74 years ago. It used to be commonly in use. Before I was colonised with pseudomonas I recall my GP prescribing it and it worked very well for the bacteria I was growing at the time. However on a later consultation he stated it could cause haematological problems and that we should save it for a rainy day. I have never been prescribed it since.

I feel for you as I too am intolerant of Cipro which is a pain. I do wish you luck though with the nebulised prophylaxis meds. I can’t take them either and it’s a bummer.

Cx

[Lfcpremier in reply to cofdrop-UK]

Certainly sounds as if it is cofdrop!Feel quite helpless when so few drugs/ strategies to deal with pseudomonas.

Take care!x

[cofdrop-UK in reply to Lfcpremier]

Please try not to feel helpless. You have nebulised ab trial to go yet to try and keep on an even keel and IVs for treatment. There appears too to be more research being undertaken re pseudo. 🙂Cxx