Pseudomanosis: what is your protocol/medications

I have that. too. My doctor prescribed Cipro at two different times, the last after coughing up blood. It was totally affective. I have brevespi twice a day and ulberteral for emergencies, but now I dont need them as I'm not coughing or producing phlegm, which my doc says is a good sign. Good luck. I've had so many pulmonary doctors treat me many different ways, which .makes me mad. This last guy is totally amazing. He even walked me through a meditation I can do if the hacking cough gets out of control because I panic. I use the nebulizer when I lose my breath.

I’ve been prescribed colymycin. They do have IV antibiotics available although limited. Does your pulmonologist specialize in bronchiectasis? Have yoy considered using an AerobiKa? It really helps me bring up the mucous.

Hi,
I've been fighting pseudomonas for over 10 years because it became the mucoid form. There are many things you can do! You need to find a new pulmonologist, and soon! Levaquin and Cipro, while not optimal to take, can get rid of it. There are many IV medications that can fight it. I could only tolerate inhaled Tobramycin for about 18 months, but am now on inhaled Colistin - two weeks on, then two weeks off. I'm better than I have been in over a decade. Exercise also helps.
You are not alone and it is not hopeless! Talk to your PCP about finding a better pulmonologist and see if he/she can pull some strings to get you in ASAP!
I hope you feel better soon!

You can never get rid of pseudomonas. Airway clearance keeps the bacteria from colonizing. It’s a good idea to have your sputum tested regularly to make sure pseudomonas does not go crazy in your lungs. I can only go on IV antibiotics at present because oral meds no longer work for me. Stay hydrated!

I also have mucoid form of Pseudo. I was not able to tolerate the Toby. But when I asked my pulmo about Colistin he said the side effects would be even worse than the Toby. Are you not finding that to be true?

Irenea8, About a year in to being on Toby, I started to lose my voice. I pushed through for another six months but when my hearing was impacted, I called it quits. I started Colistin and have been on it for over two years. I find it easy to tolerate. I have not noticed any negative side effects. As per NJH recommendation, I use it two weeks on/off. My last sputum sample showed few pseudomonas, which is a first! Before starting inhaled antibiotics, I was on at least five PICC lines, so I am thankful this current therapy is working. I hope you find what works for you!

I have pseudomonas and BE. I now wear hearing aids from when I was on Tobi many years ago. I was then prescribed Colistin to which I had no side effects and it worked very well for me to the point where my mucus ran clear. I was on Colistin for about 20 years. I have now been subscribed Cayston and just completed my first month of on 28 days then off 28 days. So good so far. No side effects. The pseudomonas seems to be in check.

This is very helpful to know so thank you. I will press my Pulmo about the Colistin. I have read others saying it did not have side effects although I find that hard to believe. With the Toby I lost my voice after just 5 treatments but that was not the issue that made me stop. It reduced my urine output and seemed to negatively impact my kidney function.

20 years wow. So did you switch to Cayston because the Colistin finally stopped working for you? I heard that Cayston is now covered by medicare but is that Part D or Part B? Was the colistin covered by part D or part B? I know that Toby is covered by Part B which is nice if you can tolerate it!

By the way if you dont mind my asking, what IV Antibiotics did you try with the 5 PICC lines and what happened with each one? How long did they help or did they?