Big 3 Daily? What’s your dosage?

Posted by BlueSplashGirl/ Carolyn @bluesplashgirl, Apr 18, 2020

Hi Everyone,
I have seen dosage posts about 3x a week, etc. I am on a high dosage daily. Ethambutol 1000mg, rifampin 600mg, azithromycin 250mg. Any comments, questions, concerns regarding this? If I Google the meds I get the typical scary Google stuff. Thank you and I hope everyone is staying home, safe and well.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Tell your husband that I credit my ability to live well with this disease to the people on Mayo Connect and all I have learned here.
Bronchiectasis is considered an uncommon disease, and not every pulmonologist or infectious disease doc is familiar with the MAC and other infections we acquire. Do you know how much experience your docs have? It took me a couple tries to find the right combination of providers.
Have you considered seeking care at Mayo Jacksonville or another large facility?

Second, the medication, even more than the disease, takes a huge toll on our bodies and a lot of us look for ways to stop them and still stay healthy.

One of the gold standard providers is National Jewish health in Denver (NJH) Along with some other centers they have found nebulizing 7% saline and doing airway clearance daily can sometimes be used in place of antibiotics. Many in this group, including me, use this routine. I stopped antibiotics after 18 months, while I still had positive cultures, but fewer lesions in my lungs. That was over w years ago. After about a year I regained most of my lost weight and energy, reduced coughing, and have had one exacerbation that required treatment. I still am short of breath and have to be careful to stay healthy and get enough rest.

You might want to search this site for 7% saline and learn how some of us manage.

Also would you consider asking for a new CT before seeing the pulmonologist in June to see if your lungs are changed?
Sue

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