Just an update. My new pulmonologist (specialist in bronchiectasis) said it was okay to go on and off mucinex as needed. He said it is a common practice in Europe now (tho it is not common in the states). He also suggested that I take it prophylactically before, during, and after trips. (I have a tendency to get sick or have an exacerbation of my bronchiectasis when I travel). He is also a believer in bringing along antibiotics for this purpose also. It was wonderful having a doctor that supported all the information that I have learned on this site over the last 3 years. Just an FYI, my daily regimen mirrors the healthy practice of 7% S.C. nebs, aerobika, and ACT (airway clearance) and exercise. I completed big 3, am clear of MAC, but have not had a pulmonary function test in 3 years. Still send sputum samples every 2 months. He also said there is a new medicine coming on the market next year for bronchiectasis. (not sure if it is not a wider trial). Excited for the news tho.
Cindy
My primary suggested that I take Muxinex every 12 hours. I just started and the first three days went well. Really controlled my cough however, the fourth and fifth days were terrible. I was right back to coughing all day. Not sure why. Humidity increases my coughing spells, but that was not case. I will continue to try and might go to a compounding pharmacy in town.
Just an update. My new pulmonologist (specialist in bronchiectasis) said it was okay to go on and off mucinex as needed. He said it is a common practice in Europe now (tho it is not common in the states). He also suggested that I take it prophylactically before, during, and after trips. (I have a tendency to get sick or have an exacerbation of my bronchiectasis when I travel). He is also a believer in bringing along antibiotics for this purpose also. It was wonderful having a doctor that supported all the information that I have learned on this site over the last 3 years. Just an FYI, my daily regimen mirrors the healthy practice of 7% S.C. nebs, aerobika, and ACT (airway clearance) and exercise. I completed big 3, am clear of MAC, but have not had a pulmonary function test in 3 years. Still send sputum samples every 2 months. He also said there is a new medicine coming on the market next year for bronchiectasis. (not sure if it is not a wider trial). Excited for the news tho.
Cindy
Your new pulmonologist sounds like a great find -congratulations! If this is anywhere in the Northeast, I would love to know. It's interesting following European info on bronchiectasis (it's I think the University of Dundee that is exploring a strong possible link between broncheictasis and IBD, for instance). I am really interested to hear that taking mucinex like that is standard.
I am newly-diagnosed and am curious if you take anything in your nebs besides 7% outside of flareups? I also have asthma and am having the hardest time introducing saline to my body, even at 3%.
Thanks!
Your new pulmonologist sounds like a great find -congratulations! If this is anywhere in the Northeast, I would love to know. It's interesting following European info on bronchiectasis (it's I think the University of Dundee that is exploring a strong possible link between broncheictasis and IBD, for instance). I am really interested to hear that taking mucinex like that is standard.
I am newly-diagnosed and am curious if you take anything in your nebs besides 7% outside of flareups? I also have asthma and am having the hardest time introducing saline to my body, even at 3%.
Thanks!
No, I don’t have asthma, so the 7% is all i do. In the beginning the increased sodium chloride was a bit much. Someone suggested to breathe normally during nebs. That helped(not taking such deep breaths, but slow). I live in Louisiana.
Your new pulmonologist sounds like a great find -congratulations! If this is anywhere in the Northeast, I would love to know. It's interesting following European info on bronchiectasis (it's I think the University of Dundee that is exploring a strong possible link between broncheictasis and IBD, for instance). I am really interested to hear that taking mucinex like that is standard.
I am newly-diagnosed and am curious if you take anything in your nebs besides 7% outside of flareups? I also have asthma and am having the hardest time introducing saline to my body, even at 3%.
Thanks!
Just an update. My new pulmonologist (specialist in bronchiectasis) said it was okay to go on and off mucinex as needed. He said it is a common practice in Europe now (tho it is not common in the states). He also suggested that I take it prophylactically before, during, and after trips. (I have a tendency to get sick or have an exacerbation of my bronchiectasis when I travel). He is also a believer in bringing along antibiotics for this purpose also. It was wonderful having a doctor that supported all the information that I have learned on this site over the last 3 years. Just an FYI, my daily regimen mirrors the healthy practice of 7% S.C. nebs, aerobika, and ACT (airway clearance) and exercise. I completed big 3, am clear of MAC, but have not had a pulmonary function test in 3 years. Still send sputum samples every 2 months. He also said there is a new medicine coming on the market next year for bronchiectasis. (not sure if it is not a wider trial). Excited for the news tho.
Cindy
Just an update. My new pulmonologist (specialist in bronchiectasis) said it was okay to go on and off mucinex as needed. He said it is a common practice in Europe now (tho it is not common in the states). He also suggested that I take it prophylactically before, during, and after trips. (I have a tendency to get sick or have an exacerbation of my bronchiectasis when I travel). He is also a believer in bringing along antibiotics for this purpose also. It was wonderful having a doctor that supported all the information that I have learned on this site over the last 3 years. Just an FYI, my daily regimen mirrors the healthy practice of 7% S.C. nebs, aerobika, and ACT (airway clearance) and exercise. I completed big 3, am clear of MAC, but have not had a pulmonary function test in 3 years. Still send sputum samples every 2 months. He also said there is a new medicine coming on the market next year for bronchiectasis. (not sure if it is not a wider trial). Excited for the news tho.
Cindy
Hi Cindy,
Congratulations for getting rid of MAC and thank you for your helpful post. I am wondering how do you know which antibiotics to bring for an exacerbation of your bronchiectasis? Sounds like you have an antibiotic for this purpose, if so, what is that? I am preparing for my China trip.
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Just an update. My new pulmonologist (specialist in bronchiectasis) said it was okay to go on and off mucinex as needed. He said it is a common practice in Europe now (tho it is not common in the states). He also suggested that I take it prophylactically before, during, and after trips. (I have a tendency to get sick or have an exacerbation of my bronchiectasis when I travel). He is also a believer in bringing along antibiotics for this purpose also. It was wonderful having a doctor that supported all the information that I have learned on this site over the last 3 years. Just an FYI, my daily regimen mirrors the healthy practice of 7% S.C. nebs, aerobika, and ACT (airway clearance) and exercise. I completed big 3, am clear of MAC, but have not had a pulmonary function test in 3 years. Still send sputum samples every 2 months. He also said there is a new medicine coming on the market next year for bronchiectasis. (not sure if it is not a wider trial). Excited for the news tho.
Cindy
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9 ReactionsMy primary suggested that I take Muxinex every 12 hours. I just started and the first three days went well. Really controlled my cough however, the fourth and fifth days were terrible. I was right back to coughing all day. Not sure why. Humidity increases my coughing spells, but that was not case. I will continue to try and might go to a compounding pharmacy in town.
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1 ReactionAre you thinking of getting straight guafenesin compounded?
Your new pulmonologist sounds like a great find -congratulations! If this is anywhere in the Northeast, I would love to know. It's interesting following European info on bronchiectasis (it's I think the University of Dundee that is exploring a strong possible link between broncheictasis and IBD, for instance). I am really interested to hear that taking mucinex like that is standard.
I am newly-diagnosed and am curious if you take anything in your nebs besides 7% outside of flareups? I also have asthma and am having the hardest time introducing saline to my body, even at 3%.
Thanks!
I am thinking about it. Would like more feedback on the compound.
No, I don’t have asthma, so the 7% is all i do. In the beginning the increased sodium chloride was a bit much. Someone suggested to breathe normally during nebs. That helped(not taking such deep breaths, but slow). I live in Louisiana.
I’m going to national Jewish health on the 26. Denver. I’ll ask about the Mucinex and post on here!
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4 Reactionsi use an aerobika attached to my nebulizer and it filters that strong salt reaction a bit......
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1 ReactionGreat news Cindy!Interesting to know about the European use too.
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1 ReactionHi Cindy,
Congratulations for getting rid of MAC and thank you for your helpful post. I am wondering how do you know which antibiotics to bring for an exacerbation of your bronchiectasis? Sounds like you have an antibiotic for this purpose, if so, what is that? I am preparing for my China trip.
Thanks again.
Ling