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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@jellieb

My Mom had pseudo. She was on Tobramyicin- ? Toby?? She acquired it in the hospital. She only had 1 1/2 lung & had chronic bronchiectasis most of her life.

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I read your other post also.
Thinking about what our parents suffered with and complicated their lives will always be something that tears at us.
Take care of yourself.... now..... and enjoy each of the meaningful, however simple, things we do and have to do each day to avoid that 'double edge sword' called a hospital.
Barbara

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@alleycatkate

@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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@pamelasc1 , just saw your post. If you have pseudomonas in your sinuses, one thing that works well is the steroid rinse: for one month, you rinse your sinuses with saline + small dose of steroid powder twice a day, then for the rest of the year you rinse with saline + small dose of steroid powder once a day. You should ask your ENT about it.For my lungs, I am intolerant to Levo, so I just nebulize with 3% saline twice a day, has been working so far.
Best wishes of great health!

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@gigiv

@pamelasc1 , just saw your post. If you have pseudomonas in your sinuses, one thing that works well is the steroid rinse: for one month, you rinse your sinuses with saline + small dose of steroid powder twice a day, then for the rest of the year you rinse with saline + small dose of steroid powder once a day. You should ask your ENT about it.For my lungs, I am intolerant to Levo, so I just nebulize with 3% saline twice a day, has been working so far.
Best wishes of great health!

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*saline and Advair twice a day.

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@gigiv

@pamelasc1 , just saw your post. If you have pseudomonas in your sinuses, one thing that works well is the steroid rinse: for one month, you rinse your sinuses with saline + small dose of steroid powder twice a day, then for the rest of the year you rinse with saline + small dose of steroid powder once a day. You should ask your ENT about it.For my lungs, I am intolerant to Levo, so I just nebulize with 3% saline twice a day, has been working so far.
Best wishes of great health!

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@gigiv Thanks for your post. An interesting idea.

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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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Sue, how many times a day within a one week period do you nebulize 7% saline?

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Following. Recently started with pseudomonas. Can't take cipro so only option is IV antibiotic-trying to avoid. Interested in responses.

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@happy2023

Sue, how many times a day within a one week period do you nebulize 7% saline?

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I have stable bronchiectasis, so unless I have an exacerbation I neb saline twice a week. I use an inhaler and do airway clearance every day.

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Even though I was sensitive to most antibiotics, Cipro did not get rid of my Pseudomonas. I took Levaquin for years each time I got a chest infection, most likely building up some resistance to it.
My PCP says the Pseudomonas colonizes in the lungs.
My pulmonologist at National Jewish laid out a plan for me to just keep the Pseudomonas knocked back. This plan is.....
morning and evening: 2 puffs Levalbuterol inhaler; followed by 7% nebulized saline; followed by Symbicort steroid inhaler (low dose 85 mcg/4.5 mcg) 2 puffs morning and 2 puffs evening.
I used a SmartVest for 4 months, sustained spinal compression fractures, now switching to a wrap, not vest, by Electromed with settings very low to begin with. Am going to try the Volara which nebulizes saline and oscillates in the same treatment.
I do pharmacologic airway clearance morning and evening (in the plan mentioned above).
Mid-day I do postural drainage airway clearance with supine exercises, deep breathing, huff coughing, manual percussion, Aerobika.
So far so good.....no exacerbations for 1 year now.
I have started wearing a mask every time I go out, and especially when I walk my dog, just to keep the dust and particles out of my lungs. I wear an N95 insert anytime I am around people, as at a grocery store or visits to the doctor.

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@happy2023

Even though I was sensitive to most antibiotics, Cipro did not get rid of my Pseudomonas. I took Levaquin for years each time I got a chest infection, most likely building up some resistance to it.
My PCP says the Pseudomonas colonizes in the lungs.
My pulmonologist at National Jewish laid out a plan for me to just keep the Pseudomonas knocked back. This plan is.....
morning and evening: 2 puffs Levalbuterol inhaler; followed by 7% nebulized saline; followed by Symbicort steroid inhaler (low dose 85 mcg/4.5 mcg) 2 puffs morning and 2 puffs evening.
I used a SmartVest for 4 months, sustained spinal compression fractures, now switching to a wrap, not vest, by Electromed with settings very low to begin with. Am going to try the Volara which nebulizes saline and oscillates in the same treatment.
I do pharmacologic airway clearance morning and evening (in the plan mentioned above).
Mid-day I do postural drainage airway clearance with supine exercises, deep breathing, huff coughing, manual percussion, Aerobika.
So far so good.....no exacerbations for 1 year now.
I have started wearing a mask every time I go out, and especially when I walk my dog, just to keep the dust and particles out of my lungs. I wear an N95 insert anytime I am around people, as at a grocery store or visits to the doctor.

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Why was the Symbicort prescribed? Was that specific to Pseudo?? When you do try the Volara, would love to hear what you think. Thanks!

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@sueinmn

I have stable bronchiectasis, so unless I have an exacerbation I neb saline twice a week. I use an inhaler and do airway clearance every day.

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Sue-
When you say you have stable bronchiectasis, can you explain. I think I know what you mean but not sure I am right.
My Oct. CScan showed two areas of improvement but one new area showing plugging in the lower left lobe. Working harder to get better CScan results next time, which means, apparently, I won't fully know until a year if I improved due to the once a year CScan.
Barbara

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