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Diagnosed with MAC but not being treated
MAC & Bronchiectasis | Last Active: Apr 15, 2023 | Replies (100)Comment receiving replies
Need help. I have been using the following on a daily basis and, despite this, I still have constant nasal congestion, a post nasal drip and nearly constant cough.
Flonase, Loratodine 10mg, Mucinex DM (2x/day), Clear Lungs (Chinese herbs)
I use compression vest and use Neli rinse 2x per day
I am especially prone to coughing fits at night which wakes my husband. He said I even cough in my sleep! My dr prescribed Guaifenesin w/codeine 10mg which I use very sparingly.
I keep seeing mention of 7% saline numerous and asked my dr.
Here is her response: "I don't generally use 7% saline. I use mucomsyt mixed with albuterol to thin the mucus, along with the vest. If this does not work, then I use dornase."
I am waiting for the acetylcysteine 100 mg/mL (10 %) solution she prescribed to be used with my nebulizer 2 or 3x per day.
I am afraid of the antibiotics and have read,with underlying Bronchiectasis, there is no guarantee that you will not become reinfected even if you beat it. Plus, I have 3 friends who lost their hearing in one ear due to the antibiotics. I am a pro musician and this scares the heck out of me.
I am exercising and I eat healthy. I am trying my best to keep a positive attitude but this is staring to get to me. I have not gone so far as to wear a mask in the shower or boil my water. Do you think, if I have MAC already, would wearing a mask prevent it from getting worse?
Your thoughts are greatly appreciated. Thank you for your support.
Replies to "Need help. I have been using the following on a daily basis and, despite this, I..."
I certainly empathize with your struggles with the post nasal drainage. I had it for a long time and my pulmonologist thought it was contributing to the mucus in lungs. He prescribed Azelastine 2puffs 2x day and kept the Flonase 2 twice daily which resulted in a vast improvement in post nasal drainage. It comes in a combo spray as well. I'm also on albuterol nebs, the Aerobika and an inhaler which is likely to be changed once cultures are back.
Note: I agree with using regular Mucinex. My pulmonologist started that and ENT suggested changing to Mucinex DM, but I'm a retired nurse and we encouraged patients to cough mucus out. I stayed with pulmonologist's rec.
Note: I'm pretty new, just went to Mayo, have bronchiectasis and am awaiting sputum results. Mayo wants me to switch to their triple spray, but I have plans next week and don't want to rock the boat. Will try it later.
Good luck to you!
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Based on your symptoms and my experiences, let me comment on your medication regimen:
Mucinex DM contains a cough suppressant and should not be used long term. The right Mucinex to use long-term is Mucinex Extended Release which is guaifenesin with no other additives.
Clear Lungs contains about 15 plants and herbs. I know we always assume these are harmless, but I personally cannot use it because there are ingredients in there to which I am allergic. Seeing that you already use Loratadine makes me wonder I wonder if you also may be allergic & discontinuing Clear Lungs might help?
The Neti Pot is repeatedly putting many ounces of saline water into your already overactive sinuses. When I do this, I have continuous drainage in my throat, so I only use it when I have a cold or sinus infection, and then just for a few days. Maybe it is not as helpful as you would think?
As for precautions - a mask will not prevent MAC or keep it from getting worse, but in close contact situations, a mask can prevent you from catching other respiratory illnesses. I don't believe wearing a mask in the shower would offer any protection, nor do I go to the length of boiling my water. In my (inexpert) opinion, you are getting a lot higher dose of bacteria of all sorts in your lungs from the mist above a swimming pool while doing aerobics than from showering or drinking water. Only you can decide which precautions are right for you.
Sue