Hair Loss and MAC

Hi, I just finished month one. My doctor did start me one at a time to make sure I could tolerate each one. I don’t take all of mine together. I take Azithro (on empty stomach) first thing in morning. At noon I take Ethambutol (with food) and two hours after dinner I take rifampin. So far I have done well. Every once in a while I have stomach pain after azithro. Best of luck to you!

I take the ethambutol and azithromycin early in the morning on empty stomach. At 3:00 pm I take rifampin empty stomach again. Anyone taking Arikayce, I just started two days ago and there is so much work on cleaning the lamira hand set. My MAC is not doing anything that is why my Dr told me to do Arikayce.

I use inhaled Amikacin 3x per week and have been on it for 5 months. I go back to NJH next month and they will do another CT scan to see if it is working to help close my cavity.

Thank you for sharing that information. Was your Dr. a Pulmonologist or Infectious Disease Dr.?
I don't think I am going to take it the way he wants me to. How long do you wait to eat in the morning after taking Azithro. I have always had to eat first thing when I wake up,
this will be a challenge.

I have also had a lot of hair loss. Trying to figure out the best way to help get some of my thickness back. I too have a lot of hair but I can really see the difference. Would love to know if anyone has figured out a good remedy.

Anxious to here how you do on the arikayce. I'm starting next week. Not sure how I feel about it.

I always had to eat first thing in the morning, too, because I’d wake up very hungry. But now I take my meds first thing in the morning and nebulize saline and Arikayce during the hour I have to wait before eating. My body has adjusted and my stomach is more patient with me!

Thank you. What type of Dr. did you see?

Yes, I experienced hair loss and didn’t know the cause until I was diagnosed with MAC. I’ve seen 2 different infectious disease doctors and 2 pulmonologists.
It seems to me that they don’t really know about many of the effects of MAC. It is discouraging .

Interesting topic, hair loss. Did you know it can happen with many different illnesses or conditions? Not only did I lose hair when very ill with MAC, and later even a little more from the antibiotics, but I also lost my hair years ago when I had heavy metal poisoning. And during/after pregnancy. And after 3 major surgeries in one year. And when I had Graves Disease (hyperthyroidism.)
Each of these also caused me to have weak or easily broken fingernails and toenails. And dry, delicate skin.
It seems that the body will automatically shut down nourishment to less-essential systems to send it to more critical places.
Sue