1. < MAC & Bronchiectasis

Have MAC with pseudemonas

Posted by pamelasc @pamelasc1, Nov 8, 2024

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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blm1007blm1007 | @blm1007blm1007 | Nov 24, 2024
In reply to @sueinmn "Every time I use my aerobika I wash it with Dawn and hot water. Same with..." + (show)
@sueinmn

Every time I use my aerobika I wash it with Dawn and hot water. Same with my nebs. Once every week or 2 I boil them. I would say after 8-10 uses of the aerobika and 4-5 uses of the neb.

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Sue...If I remember correctly you had to come off of the antibiotics shortly after taking them once you were finally diagnosed with pseudomonas and MAC.
I know you did a lot in terms of shoes stay outside, clothes immediately to the laundry room, upstream and downstream water filtering and if I am understanding correctly the Aerobika, nebulizing and full airway clearance.
This may be a 'stupid' question because of all you did/do...but..do you think there was one particular thing that helped you the most?
Also, if you can recall...how long did it take for you to rid yourself of the pseudomonas and MAC? If I read everything correctly you rid yourself of both and are now clear of both.???
Barbara

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Sue, Volunteer Mentor | @sueinmn | Nov 24, 2024
In reply to @blm1007blm1007 "Sue...If I remember correctly you had to come off of the antibiotics shortly after taking them..." + (show)
@blm1007blm1007

Sue...If I remember correctly you had to come off of the antibiotics shortly after taking them once you were finally diagnosed with pseudomonas and MAC.
I know you did a lot in terms of shoes stay outside, clothes immediately to the laundry room, upstream and downstream water filtering and if I am understanding correctly the Aerobika, nebulizing and full airway clearance.
This may be a 'stupid' question because of all you did/do...but..do you think there was one particular thing that helped you the most?
Also, if you can recall...how long did it take for you to rid yourself of the pseudomonas and MAC? If I read everything correctly you rid yourself of both and are now clear of both.???
Barbara

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Actually I was on the antibiotics for 12 months 3 times a week and 6 months daily.

The two best things without a doubt were daily airway clearance and 7% saline - at first twice a day, then daily for a year. I didn't decrease frequency until a stable CT and well controlled asthma.

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Sue, Volunteer Mentor | @sueinmn | Nov 24, 2024
In reply to @pamelasc1 "Sue - I was using Symbicort also until Medicare stopped covering it... are you getting a..." + (show)
@pamelasc1

Sue - I was using Symbicort also until Medicare stopped covering it... are you getting a good price on the Sym? Or do you buy it in Canada? I use Breo now but I feel the Symbicort was better. Pam in Sudbury

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Appeal! And sometimes it helps to have the doctor support it. There are now at least 3 generic versions available- Breyna is one, I don't have any of the others right now.

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blm1007blm1007 | @blm1007blm1007 | Nov 24, 2024
In reply to @sueinmn "Actually I was on the antibiotics for 12 months 3 times a week and 6 months..." + (show)
@sueinmn

Actually I was on the antibiotics for 12 months 3 times a week and 6 months daily.

The two best things without a doubt were daily airway clearance and 7% saline - at first twice a day, then daily for a year. I didn't decrease frequency until a stable CT and well controlled asthma.

Jump to this post

Oh, thanks for clarifying that for me. I needed to hear that, the time element on the antibiotics.
Barbara

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pamelasc | @pamelasc1 | Nov 30, 2024
In reply to @sueinmn "Scoop, you might have misunderstood. I do airway clearance everyday, sometimes twice a day, using active..." + (show)
@sueinmn

Scoop, you might have misunderstood. I do airway clearance everyday, sometimes twice a day, using active breathing, Aerobika or exercise. With Mucinex and plenty of water I clear the mucus. I use saline twice a week as a precaution, to chase any bugs trying to settle in my lungs.

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Hello Sue - I am using Mucinex now to help clear up my sinus drip which makes me cough all day long. Do you use your Mucinex for just short periods of time, or everyday, always? Pam in Sudbury

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Sue, Volunteer Mentor | @sueinmn | Nov 30, 2024
In reply to @pamelasc1 "Hello Sue - I am using Mucinex now to help clear up my sinus drip which..." + (show)
@pamelasc1

Hello Sue - I am using Mucinex now to help clear up my sinus drip which makes me cough all day long. Do you use your Mucinex for just short periods of time, or everyday, always? Pam in Sudbury

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Every day, always, for nearly 40 years. It was originally a prescription from my ENT when I had very sticky mucus and repeated ear and sinus infections. When he punctured my eardrums to insert tubes, the mucus was so fluid was so thick it didn't drain and he had to suctin it out. I hav occasionally runt out, and after 2-3 days my mucus starts to thicken again.
For thos ho may wonder - no, it is not Cystic Fibrosis, I was tested.

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pamelasc | @pamelasc1 | Nov 30, 2024
In reply to @sueinmn "Every day, always, for nearly 40 years. It was originally a prescription from my ENT when..." + (show)
@sueinmn

Every day, always, for nearly 40 years. It was originally a prescription from my ENT when I had very sticky mucus and repeated ear and sinus infections. When he punctured my eardrums to insert tubes, the mucus was so fluid was so thick it didn't drain and he had to suctin it out. I hav occasionally runt out, and after 2-3 days my mucus starts to thicken again.
For thos ho may wonder - no, it is not Cystic Fibrosis, I was tested.

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Dear Sue - this is SO reassuring, in that I should not be reticent to take Mucinex! 40 years! That is an amazing record for staying on one drug; it has to be benign enough! I am sorry you have been plagued with the problem of mucous but it seems you have the right approach to keep it from blowing up. I will now take Mucinex, not necessarily with pleasure, but certainly without worries! Thank you for this, Pamela

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