1. < MAC & Bronchiectasis

Should I start Breyna?

Posted by upside @upside, May 6 2:33am

Hi all. I'm a newly diagnosed MAC patient, 53 yrs old and still active. I've had a chronic, productive cough for many years ( blamed it on my numerous allergies). Currently using an Acapella valve with huf cough. I've been exercising in the morning and seem to be building up more pulmonary stamina. Not needing the Albuterol inhaler at this time. The pulmonologist wants me to start Breyna, it scares me. What do you think? Also, he prescribed the 3% nebulizer, should I be using 7%? Thank you for your help!

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scoop | @scoop | May 13 8:58pm

It won't provide all the iron you need but cooking on a cast iron pan can help supplement iron.

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bernadene24 | @bernadene24 | May 15 8:24am
In reply to @sweethighland "Thank you Bernadene24. Iron is quite controversial with bacterial infection because bacteria consume iron to grow...." + (show)
@sweethighland

Thank you Bernadene24. Iron is quite controversial with bacterial infection because bacteria consume iron to grow. People with chronic infection tend to have low iron according to my doctor. That's why I have to be careful with iron but I really need to raise my iron level up, currently at 35, normal is 50. I know Floradix and I like it too, do you just take Floradix? Do you take 2 times a day? I'm taking tablet and wondering I might need to take liquid because it is gentle on your stomach. May I know what dose you took because I have follow up in 2 months.

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I took the Floradix twice a day and followed the amount on the directions. I also took psyllium, about two teaspoons once a day, to fend off any constipation. That worked very well. Like I said, it made a difference in my fatigue/weakness so that I could start exercising and that, I see, is making a difference. If the issue comes up again and an iron supplement is suggested, I will have to take a deeper dive into the effect it has on my resident bacteria. I appreciate you mentioning the iron controversy. I had no idea.

This is one of the things that is so great about this group. People generously share so much helpful information. I had no idea about the iron, had no idea about Breyna suppressing the immune system, no idea about airway clearance or nebulization. My doctors have said nothing about these things. Great gratitude to all of you who are here!

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1 reply
irenea8 | @irenea8 | May 16 7:37am
In reply to @bernadene24 "I took the Floradix twice a day and followed the amount on the directions. I also..." + (show)
@bernadene24

I took the Floradix twice a day and followed the amount on the directions. I also took psyllium, about two teaspoons once a day, to fend off any constipation. That worked very well. Like I said, it made a difference in my fatigue/weakness so that I could start exercising and that, I see, is making a difference. If the issue comes up again and an iron supplement is suggested, I will have to take a deeper dive into the effect it has on my resident bacteria. I appreciate you mentioning the iron controversy. I had no idea.

This is one of the things that is so great about this group. People generously share so much helpful information. I had no idea about the iron, had no idea about Breyna suppressing the immune system, no idea about airway clearance or nebulization. My doctors have said nothing about these things. Great gratitude to all of you who are here!

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My pulmo said if you actually NEED iron you can supplement it. But he said never get an iron infusion. Pseudomonas binds to iron.

REPLY
upside | @upside | May 30 9:50pm
In reply to @rosefoxx1 "Also, how old are you? I don’t know if you’re young or older. It could make..." + (show)
@rosefoxx1

Also, how old are you? I don’t know if you’re young or older. It could make a difference.

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@rosefoxx1 I'm 53 yrs old, thank you for the support and advice. I'm currently waiting for a call back from a MAC specialist. The referral is being reviewed. Fingers crossed!

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rmoore901 | @rmoore901 | May 31 8:29am

Interesting enough I was just prescribed this during my PFT follow up. I had a good appointment with the PA at my pulmonologists office who went over my symptoms and gave me some options and suggestions to help with my shortness of breath and lack of being productive in my airway clearance. I did have asthma findings in the PFT which made this option seem viable. I stop Cresemba this weekend so will start the Breyna on Monday. She did also suggest a vest which there seem to be very mixed reviews on but worth trying to attempt to get the gunk out and avoid recurrence.

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