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Have you decreased Airway Clearance from 2 down to 1 a day?
MAC & Bronchiectasis | Last Active: 1 day ago | Replies (32)Comment receiving replies
Mucoid Pseudomonas for 15 years is a long time. I also have mucoid pseudo. which is the worse. I would keep doing twice a day nebs but that is just me since I have never minded the time it takes. How many IV antibiotics did you do in all those years? Sounds like the Colistin is working for you which is great. No side effects from it? How long have you been on it? My pulmo said it would have worse side effects than the Toby but I wonder if that is correct. Has the Brinsupri helped?
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@irenea8 Over the 10 years before I found NJH I was on IV Meropenem, Doripenem, Zosyn, and Cefepime - some more than once. I was also given Levaquin a couple times. Tobramycin worked well at first, but damaged my vocal cords and I lost some hearing. My vocal cords still have some scarring but are mostly recovered.
Colistin has been great! I have been on it almost two years with no side effects. I use it two weeks on/off and it has kept my pseudomonas well-suppressed.
Brinsupri has reduced the inflammation in my lungs. The SED rate in my bloodwork has decreased, which is also positive. I sometimes get a short headache during the day that I didn't have before, and my blood pressure has gone up a little but it was low to start with. I still deal with a lot of fatigue, but I have struggled with good sleep since I entered menopause 20 years ago.