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Have MAC with pseudemonas
Hello - this is Pam in Sudbury, MA. I have not been on the site for some time now, but was when I first came down with MAC in 2015. Recently I have been getting many pseudemonas infections and my lung doctor wants to try the inhaled drug "Cayston". I have several questions: 1. Has anyone also had numerous cases of pseudemonas and how did you deal with it? 2. Has anyone used Cayston, how long did you use it, and did you have any side affects? 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 anyone used other therapies to keep the pseudemonas at bay, such as taking in the nebulizer albuterol once a day, and the saline solution once a day?
Any advice will be greatly appreciated. Thanks, Pam
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It does make sense, so I would like t hear what she says too.
Symbicort was prescribed in 2013 for Bronchiectasis, no relation to the Pseudomonas found September 2023.
I do not have asthma
Thank you Pam. I had not heard of something like Symbicort being prescribed for BE unless you have Asthma or COPD. So that is interesting.
Hello happy2023 - I just called "wellbefore" to order what you suggested, but they no longer sell the Halyard product. But thank you. I did order the PM2.5 inserts from amazon so that was very helpful. Pam in Sudbury, MA
Hello Pam in Sudbury, the problem with the PM2.5 inserts is that they do not protect you from Covid. When Covid struck I remember seeing Dr. Fauci wearing an N95 under a cloth mask for protection. This is the mask I wear when going out in public or to the doctor's office.
Take care and be well.
Pam in Colorado
Hello Pam - I have had pseudemonas since 2015, getting it every year 2 or 3 times. I have just begun the regimen of 2 puffs of albuterol followed by saline in the nebulizer. I am hoping it will keep the pseudemonas at bay. I prefer not to use the phone to communicate, but certainly reach out by the Mayo portal if you have any specific questions. Stay well! Pam in Sudbury
Hello Sue - I have just started the plan of 2 puffs of Albuterol, followed 15 minutes later with 1 vial of 7% saline in the nebulizer. I know many of you do this twice a day, but I see that you do it twice a week. Can anyone out there speak to the issue of every day, versus twice a week? Or once a day versus twice a day. I imagine this all comes down to trial and error but I would be interested to know if doing the saline and albuterol less than twice a day, every day, has paid off for people. Pam in Sudbury
hi Pam , thank you for responding back, I do nebulizing two times daily 7% saline , after that, the aerobica .. I don’t believe you get rid of the pseudomonas but the saline does help to keep it at bay ,, Airway clearance is very important to get the mucus cleared out of the airways so the infection doesn’t cause serious problems… , Along with exercise and eating well , And staying away from people that are sick. I’m sure you probably know this from your doctors!! I myself, have it from 2019 . I was recently in the hospital for the pseudonymous with two different antibiotics that was June of this year. But it seems to have come back. I don’t think it was ever cured ! it’s very difficult to cure it. That’s why you have to keep your body as healthy as possible and keep doing the airway clearance. I’m sure you’re gonna be fine. We’re all in this together Pam . I wanted to ask you did you ever have coughing up blood? You can get that from the bronchiectasis which I did have,, i’m surprised you haven’t done the airway clearance sooner your doctor never told you? Pam , it’s very important and will make you feel better doing it. I hope this helps you and text back whenever you get a chance 🙋♀️ have a very happy & healthy Thanksgiving to you & yours !! enjoy👋🏻 Pam
When I am healthy inhaler (Symbicort) daily and saline twice a week plus daily airway clearance work fine. If I get a cold or other illness I do saline daily, and sometimes have to add a Levalbuterol neb.
BUT, I do not have any evidence of MAC or pseudomonas at this time. My last exacerbation was Covid in September, the one before it was January 2023, so this is effective for me.
@sueinmn is fortunate in her need to do less than daily airway clearance! I used to be able to do once a day but as I and my lungs have gotten older, I feel best with twice a day. The p.m. session is challenging and I'd rather be sleeping but it helps reduce nightly coughing. Plus I've had bronchiectasis for a while, which is mild but in more than 1 lobe, (no other pathogens at the moment 🙏) and working hard to keep those at bay.
So, @pamelasc1 I guess it really depends on how your lungs feel and sound. If they sound gunky and you cough a lot, 2x day clearance might benefit you. If you can go days between coughing and can sleep through the night (!) then maybe twice a day not necessary. The common denominator among us is that we have some degree of damaged lungs, and any other comparisons diverge from there.
What does your pulmonologist say?