Have MAC with pseudemonas

Posted by pamelasc @pamelasc1, 6 days ago

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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Do the sensitivities on the culture show widespread resistance to antibiotics? That maybe reason for doc’s recommendation. If it’s sensitive to other antibiotics, you might ask for a longer course of one.
My only experience with pseudomonas in sputum was with p. putida, a less common species, that I produced after I’d been sick with a sinus infection and cough. PMD had treated sinus infection with amoxicillin. My pulmonologist later suggested a 4 week course of nebulized tobramycin. We ended up agreeing on watchful waiting because the pseudomonas numbers were low (and his suggestion caught me off guard).

Is yours resistant to Tobramycin? Note- not everyone can take it. I’m just throwing out an idea.

Two things. I don’t have MAC complicating things.
My pulmonologist recently had me start nebbing 7% saline, hoping to decrease the number of respiratory infections I get this winter. I’m optimistic that it’s working because young grandson became very ill recently just hours after I’d kept him and I didn’t get it! Last winter, I caught everything. Are you nebbing with hypertonic saline?

Good luck to you. These decisions are tough..

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I have Bronchiectasis and Pseudomonas. I am treated at National Jewish Health in Denver since November 2023.
My pulmonologist said it is difficult to get rid of Pseudomonas, and even if the medication works (inhaled tobramycin), the Pseudomonas may come back.
I chose not to take the medication, which is a lengthy and expensive process.
I follow her treatment plan which is to do airway clearance faithfully twice a day to keep the Pseudomonas knocked back.
Her protocol for me is this:
Levalbuterol inhaler, nebulized 7% saline, Symbicort inhaler low dose 85mcg/45mcg (2 puffs morning, 2 puffs evening)
I do the above twice daily. And mid-day I do manual airway clearance with supine exercises, deep breathing, huff coughing, Aerobika.
I was using a compression vest until I sustained 2 spinal compression fractures. I will switch to a wrap which will take the place of the vest while I am healing.
My doctor is now prescribing the Volara System by Hillrom. I had a demonstration with Respiratory Therapy at NJH, and it seems this system will be extremely helpful.
Let me know if you have any questions.
Beat wishes

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@happy2023

I have Bronchiectasis and Pseudomonas. I am treated at National Jewish Health in Denver since November 2023.
My pulmonologist said it is difficult to get rid of Pseudomonas, and even if the medication works (inhaled tobramycin), the Pseudomonas may come back.
I chose not to take the medication, which is a lengthy and expensive process.
I follow her treatment plan which is to do airway clearance faithfully twice a day to keep the Pseudomonas knocked back.
Her protocol for me is this:
Levalbuterol inhaler, nebulized 7% saline, Symbicort inhaler low dose 85mcg/45mcg (2 puffs morning, 2 puffs evening)
I do the above twice daily. And mid-day I do manual airway clearance with supine exercises, deep breathing, huff coughing, Aerobika.
I was using a compression vest until I sustained 2 spinal compression fractures. I will switch to a wrap which will take the place of the vest while I am healing.
My doctor is now prescribing the Volara System by Hillrom. I had a demonstration with Respiratory Therapy at NJH, and it seems this system will be extremely helpful.
Let me know if you have any questions.
Beat wishes

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Sorry, Best wishes.....didn't proofread well enough

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In reply to Pam from Sudbury, I took Levoquin for years for chest infections. And I believe I built up resistance to it. No antibiotics including Ciprofloxacin worked to get rid of my Pseudomonas once I was diagnosed with it through a sputum culture.

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@pacathy

Do the sensitivities on the culture show widespread resistance to antibiotics? That maybe reason for doc’s recommendation. If it’s sensitive to other antibiotics, you might ask for a longer course of one.
My only experience with pseudomonas in sputum was with p. putida, a less common species, that I produced after I’d been sick with a sinus infection and cough. PMD had treated sinus infection with amoxicillin. My pulmonologist later suggested a 4 week course of nebulized tobramycin. We ended up agreeing on watchful waiting because the pseudomonas numbers were low (and his suggestion caught me off guard).

Is yours resistant to Tobramycin? Note- not everyone can take it. I’m just throwing out an idea.

Two things. I don’t have MAC complicating things.
My pulmonologist recently had me start nebbing 7% saline, hoping to decrease the number of respiratory infections I get this winter. I’m optimistic that it’s working because young grandson became very ill recently just hours after I’d kept him and I didn’t get it! Last winter, I caught everything. Are you nebbing with hypertonic saline?

Good luck to you. These decisions are tough..

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Cathy - nebulizing saline has been my salvation from repeated respiratory infections. In my (non-medical) mind it just makes sense that if 7% saline is inhospitable to tough guys like mycobacteria and pseudomonas, it's probably protective against other germs as well.

Yes, I cared for sick grandsons for two weeks this fall without catching what they had - even though both parents caught it!

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@sueinmn

Cathy - nebulizing saline has been my salvation from repeated respiratory infections. In my (non-medical) mind it just makes sense that if 7% saline is inhospitable to tough guys like mycobacteria and pseudomonas, it's probably protective against other germs as well.

Yes, I cared for sick grandsons for two weeks this fall without catching what they had - even though both parents caught it!

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That’s encouraging! I’ve started using it more frequently since I escaped that one.

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@pamelasc1 I was prescribed two Weeks of Cipro and Tobramycin for Pseudomonas.
My Pseudomonas were in my lungs and seemed to also be in my sinuses. This combo knocked it back beautifully, but never rid me of the pseudomonas. I have since repeated the process a year later but was unable to do the tobramycin. Shortly after I stopped Cipro, I developed very sore/tender tendons in my arm, leg and foot. Be careful of Cipro, and Levo as fluoroquinolone antibiotics can cause side effects including tendonitis and sometimes ruptured tendons. If you are taking it, be very careful of exercise while on the drug. Read the precautions for the drugs.
Best of luck with your treatment.
Kate

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@irenea8

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.

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Does Ciproflaxin cure Psuedos or does it have to taken often? I will ask my Pulmonlogist about Psuedo in my lungs. Also, where do you buy masks? I use the tube and mouthpiece.

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@nac1

Does Ciproflaxin cure Psuedos or does it have to taken often? I will ask my Pulmonlogist about Psuedo in my lungs. Also, where do you buy masks? I use the tube and mouthpiece.

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Cipro or Levo taken long enough can clear Pseudo but only if you catch it early on. Otherwise it seems to become chronic or colonized. The company that makes my neb cups sells a mask as an alternative to the mouthpiece.

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@irenea8

Cipro or Levo taken long enough can clear Pseudo but only if you catch it early on. Otherwise it seems to become chronic or colonized. The company that makes my neb cups sells a mask as an alternative to the mouthpiece.

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Is the chronic type called mucoid?

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