Have MAC with pseudemonas

The gold standard for treating bronchiectasis is airway clearance twice a day whether you have pseudemonas/MAC or not. For me that involves 2-puffs of albuterol, wait 15 minutes, then neb between 4mL and sometimes 8mL of 7% saline. All this followed by airway clearance twice a day. With bronchiectatic lungs, our lungs cannot clear themselves so we need to manually assist.

Maybe @irenea8 can weigh in about your question about Cayston.

Hello Pam, I sort of doubt that your Pseudo is numerous. It is much more likely that you knock it back with the Levo and then it comes forward again (chronic). But yes it will become resistant easily. Same thing can happen with the Cayston but perhaps will take much longer. Cayston is only approved for people with CF. Otherwise there is a 50/50 chance it will get approved and still will be very expensive for you. I did not have part D when I tried it. It cost me (wait for it) $12 K. It is still sitting in my fridge. I am not a good person to ask about its use as I get side effects from EVERYTHING. The first dose brought my HR up to 140 or so. Then switched to smaller doses to work up. Still had other side effects. I think I gave up after a few days? But I am not the usual so if you can get it for a few thousand it would be worth trying. I do not think it is meant to get rid of Pseudo but rather manage it long term every other month. They want you to use it 3 times a day but I was aiming for 2 times so it would last longer. You can also do 2 weeks on 2 weeks off. Usually Toby is prescribed instead as it is covered under Part B and will not cost you anything (talking about medicare). But for me it reduced urine output after only 5 doses. Gave up as I want my kidneys to work! Some people also find the Toby to be very harsh on the airways compared to the Cayston. The Cayston did not affect my kidneys but oddly increased my IBD tendency. How do you do on the Levo? How old are you? Did it affect your tendons or kidneys? Happy to answer anything else. They do not tell you that the Cayston requires a special nebulizer which costs separate. But I found an organization that sent me one for free as a first time user of Cayston.

PS Scoop is right that 2 times a day airway nebulizing and use of aerobika after is essential if you have Bronchiectasis and especially if Pseudo. 7% hypertonic saline. Very important!

I have been treated for MAC and pseudomonas showed on three sputum respiratory cultures. My doctors, both id and pulmonologists, said that is colonization because I did not have symptoms of pseudomonas infection which would fever, cough and a lot of sputum. So I guess it sits in me. When you say you you have had three pseudomonas infections, how did you know, how was it determined- sputum test or just the outside symptoms. Please share if you don’t mind because when I get sick I can never find the moment when it’s just infection or already exacerbation.

@pamelasc1 Welcome back, though I wish it was for a cheerier reason! A lot about Bronchiectasis, pseudomonas and MAC have changed in the past 10 years, especially and increased awareness of the value of daily airway clearance, with or without saline.

I have often wondered about this myself - we know pretty well that hypertonic saline knocks down MAC and most other NTM's, but I never really studied about the effect on pseudomonas.

You say "The doctor feels that even though I can get rid of the pseudemonas taking the drug Levofloaxin (which I have been taking on average every 2 to 3 months), it now comes back because it is either getting resistant to the Levo or that it really never goes away and just sits there until something urges it to rear its ugly head..."

Has the doctor had the lab run a sensitivity test on a sputum specimen when you get an infection? There are many antibiotics that can be used to treat it, but if it just gets knocked down but not out by the drug, "only the strong survive" and become resistant.

Here is what I found for you - I didn't do a search regarding albuterol because it doesn't have an antibiotic effect - it's only job is to open constricted airways so other treatments can be more effective. e people find an inhaler as effective as a neb for opening the airways before saline and airway clearance.

Original (old) study showing impact of hypertonic saline on pseudo:
https://pmc.ncbi.nlm.nih.gov/articles/PMC2553522/
This shows hypertonic saline (above .9%) limits the motility, or ability move, of pseudomonas. The effects begin to show around 3% but are remarkable at 7%.

Hypertonic saline + inhaled Gentamycin:
https://pmc.ncbi.nlm.nih.gov/articles/PMC7062828/
This study shows the combination of inhaled gentamycin with hypertonic saline is effective - I don know if it applies to gentamycin-resistant strains as well.

Hypertonic glucose on multi-drug resistant pseudo:
https://pmc.ncbi.nlm.nih.gov/articles/PMC7346426/
This is a very preliminary study on pseudo in wounds, meant to identify other ways to attack it. Just included to
show some ongoing research.

Since your MAC infection, have you continued doing daily airway clearance? Perhaps upping that, and adding 7% saline, would help remove the mucus where the pseudomonas hides between bouts of active infection?

Hi Pam from Sudbury. I see Dr. Gallant at UMASS university hospital and Dr. Wessolossky (ID) at the Belmont St. UMASS. . They have me on the Levoquin twice weekly now to keep the pseudomonas at bay. Dr. Gallant has me nebulizing 2x per day with the albuterol Rx. . I have not been on that inhaled one yet. Fingers crossed. Pseudomonas is a tough one. Wishing you well. Irene (Dayville,Ct.)

I have Psuedenomas in my sinuses! My ENT wants to give me Cipro. I don’t know what to do. Would it be better to take Levoflaxin?

I would go with the ENT recommendation first, because what works in lungs and sinuses may not be the same - and with the caution that a typical course of antibiotics is often too short for a sinus infection and may need to be repeated. If the Cipro doesn't work, then maybe ask them to do a susceptibility test on the culture. Many kinds of pseudo can be hard to treat due to antibiotic resistance.

Also, this may sound silly, but there are sometimes geographic differences in what works on a specific infection. I acquired a staph infection in wound while in Texas, the doc treated it with doxycycline, which usually works for me, but he had to switch to another antibiotic to finally cure it. So if your local ENT says Ciro, it may be the drug he has found most effective.

Thanks Sue! I am going with the Ciproflaxin 500 after doing some research. Seems it is better than Levoflaxin. Your comments make me even more sure. You are so helpful! I am wondering if having MAC and nebulizing is causing me to have sinus infections. Otherwise, the MAC is manageable so far.

Are you sure you do not have Pseudo in your lungs also? If you have BE and MAC then good chance you do?? My pulmonary specialist says that Pseudo usually goes up to the sinus also. I have it throughout my pulmonary system. Cipro vs Levo is very similar treatment. Some studies say Levo is more effective but i think most say Cipro is. But make sure you are aware of the side effects of each which can be very bad for some people. And I would at least check in with my Pulmo who would probably ok the Cipro 500. You can nebulize with a mask instead of the mouthpiece and maybe that would help with your sinus infection some.