Hi Diana,
The side effects from the MAC drugs that my husband Bruce has been on for almost a year have been pretty consistent and persistent.
There is a lot of what he calls brain fog, or an inability to focus or concentrate on anything for very long.
Loss of appetite or desire for food is another biggie which has led to a weight loss of 20-30 pounds on his already very thin frame. Some foods that used to be favorites such as pasta or red sauce are now a huge turnoff.
He also has gut issues including an ongoing and uncomfortable feeling of a full stomach.
Shortness of breath, another major side effect, knocks him out. He is unable to walk more than a few steps without gasping for air.
He has no dizziness but does use an oximeter which so far shows normal oxygen levels even when he is at his worst.
There is a lot of anxiety on his part, mostly triggered by the breathing issues.
Bruce had hearing issues early on from Amikaycin taken intravenously. He switched to the nebulizer version, Arikayce, and his hearing returned to normal.
His ID/Pulmonologist and our primary care doctor are supportive of the break from the MAC drugs, especially since there have been 7 MAC free cultures.
I hope this helps and that you can find some relief soon.
Melissa