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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
@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.
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@pjas972j
Thanks much. I will re visit the Colistin with my Pulmo who felt it would be even harder on me than the Toby. Most people seem to think it is easier to tolerate (on this forum). I have done Meropenem IV three times in the past 15 months. I wish I could take the Brinsupri and I may try again. I had severe vertigo attacks starting after a few weeks on it and felt on the verge of vertigo much of the time as well. When I started the Brinsupri my chronic pseudo infection was bad. Now it is better after recent IV but still afraid to restart the Brinsupri for fear of the vertigo coming back. I am not sure I have heard from anyone else on Mayo forum that has mucoid strain Pseudo. Usually the Cystic Fibrosis people get it. I do not have CF.