Inhaled Colomycin - dark brown mucus

[Ella888]

Hi

Sorry for the yucky detail but I’d be interested to hear from anyone on inhaled colomycin. I was on it for 3 months earlier in the year then stopped, cultured Pseudo again, took a course of Cipro and now back on inhaled Colomycin.

I’ve been back on it for a month but in the last few days my cough sounds different and I have blobs of dark brown mucus. I know this can be old blood from inflammation but I thought generally the mucus from Pseudo tends to be in the yellow to dark green spectrum? I will send a sample to the hospital on Tues when the PO is next open but wondered if anyone else has this on inhaled Colomycin?

Worrying the Pseudo has developed resistance over a month or it’s just not keeping it tapped down.

Pseudomonas is such a challenge.

Ella

[eleanordigby]

Yep, pseudo is a pain, but I’ve been on nebulised colomycin at least 10 years and it controls it pretty well, it flares up maybe twice a year & as I can’t take cipro I then need IV antibiotics. I’m told by my consultant resistance is fairly uncommon even after many years, so I doubt you would’ve developed it in that time. Of course you might be growing a different bacteria. Do you have a course of another oral broad spectrum antibiotic you could take?

[Ella888 in reply to eleanordigby]

It sure is. I don’t have any rescue meds so may need to try and contact someone out of hours.

That’s reassuring about resistance being fairly uncommon. Can I ask you how you know when it is flaring up? Do you feel really unwell? I had IV Meropenem last spring and it took me ages to get over it so I dread having to go to hospital especially at the moment as I am sure everyone does.

Thanks again for your reply.

[Lapis5 in reply to Ella888]

Just finished 10 days of Meropemnum to no avail. Still have Pseudomonas in lungs and. sinus.. green.Tried Colo.. but it did nothing. think my dr,s here hav e done alll they know how to do sadly, Very depressed. u might try the Mero.,. again tho. Many people do.

[eleanordigby in reply to Ella888]

With me, a flare up kind of creeps up! I start noticing my sputum getting darker and feel more congested, can’t exercise and need Ventolin more often. When that happens I take my standby antibiotics, but if they don’t work & I’m getting worse, I email my specialist nurse & she either gets a registrar to phone me or books me into the Rapid Access clinic for a check. It’s probably 2-3 weeks from onset of symptoms before I start to feel really ill. I don’t usually get a fever with it. I don’t know if my experience is common but that’s how it goes for me.

I don’t have a problem taking meropenem or ceftazidime, but I always take probiotics to protect my stomach & prevent thrush.

I find it can take 2 or 3 months, in winter anyway, to recover from a pseudo flare up. I don’t feel ill but my chest can be inflamed for that long and I have to build up to “normality” very slowly.

[NorthernGirl3]

I was using inhaled colomycin until I had a flare up and saw a different specialist. He seemed to think ypthat colomycin is an old fashioned remedy and put me on 500 mg Azithromycin tablets three times a week. It seems to be keeping the pseudomonas in check so far.

[Ella888]

That’s interesting. I find the nebulising really difficult and have a lot of anxiety around cleaning it and picking up an infection from it so I will explore that when I next speak to the consultant.

Thank you for replying.

Happy New Year!

[Ella888]

Thank you for replying Lapis5.

I am so sorry to hear of your continuing struggle with this horrible thing. I am scared of having more IV’s because it really messed up my system for months but realise I may have to. I just can’t tell if the Colomycin is doing anything and I feel completely worn out and depressed with it.

You have probably already done this but is it worth getting another specialist review?

[Ella888]

Thank you eleanordigby. It really helps to know how a flare up can creep up on you and what action you take. I think I have a reluctance to accept I am having one because I fear IV’s so much. I have the feeling you describe of chest feeling inflamed. It is interesting that you don’t get a fever because I keep taking my temperature hoping that no fever means no flare up! so that’s really useful info too.

I wish I had taken probiotics before I had the 2 weeks Meropenem because I was so unwell afterwards and it took months to get rid of the heavy overgrowth of oral thrush.