Discontinuing MAC antibiotics

Do they have you starting all the drugs tomorrow, or one at a time, at least one week apart?
Lower lobes often are good at hiding MAC because it is more difficult to get the mucus out, so the infection may not have shown up in a culture.
Good luck with the meds, we're here for you if you have questions or just need a hug and an ear.
Sue

No…. starting all. I did last time. Will let you know how it goes.
Thank you for all the knowledge you give us on this site!!!

Hi Sue. I have been on Ethambutol and ariththromycin one month. By the fourth week I started getting horrible tinnitus and intestinal blow out. Gas. Gurgling. Sick as a dog. I’m not continuing the meds. Can’t hack them.

Please...tell your doctor. I felt the dame way at 4, 8 and 12 weeks, and spent time on the phone with my pulmonologist's staff figuring out alternative times, and way to make it work.
There are ways to manage the grastrointestinal effects.
The meds take more time to work, and given how reluctant you were to start them, I am sure the doc would not have been so insistent if there is not a good reason. I managed 18 months before stopping, long enough to kill most but not all of the MAC. Now I have been able to manage with saline & airway clearance.
Sue

Sue, I appreciate your response.
I felt so so sick from those meds.
Did you get ringing in the ears? Did you get diaareah all day long with stomach gurgling, cramps? Did food in general get you sick every time you ate? Did you feel generally sick all over and incapacitated?

I would really appreciate your sharing these details with me, because I don't see how they can stop ringing in the ears. I have read over and over that many people still have the ringing after stopping the meds; because they waited too long and now, five years down the road it is too late, they still have it! Not to mention the GI problems they developed that plague them on a daily basis.

I am notoriously unable to handle side effects of any and all medicines. For some reason, my constitution does not let me take them without dire reactions. No quality of life.
What effects did you get, and how did they help you with them.....I'd really appreciate your sharing if you wish to.

I am 73 years old...also have Fibromyalgia, costochondritis....which those drugs seemed to exacerbate for some reason. Thanks Bon

I took the big 3 for 14 months. Tired of the side effects, I just stopped taking them. No more awful sweating, and my eyes are much better. No idea what my new doctor will say this week.

I am new to this exchange. I have had a chronic cough since 2015. I was diagnosed with Fibromyalgia in 1995, and in 2015 suddenly I ended in hospital with congestive heart failure, my mitral valve was prolapsed, and had severe regurgitation. I had my mitral valve repaired with open heart surgery. I have had what they call a chronic cough since. Sometimes I have wheezy chest, often my lungs sound clear they say. I have tried every med and puffer possible. They think my eyes have been effected by the steroids in the puffers. I am exhausted from coughing, nothing seems to help. My respirologist has run out of ideas. Any suggestions?

Hi, You might want to check for MAC as you had open heart surgery and there's a device they use for air way or ? that can have MAC in it. So sorry to say...

seek out an infectious disease MD or pulomologist.

I agree with what you did. I too was on for 15 months and was finally taken off of them
by a new pulmonologist. Then he started me on a nebulizer of 3% saline. This new doctor
was "amazed" that I was kept on the BIG 3 for such a length of time and never given
the opportunity to use a nebulizer.
My stomach issues cleared up instantly. I am a much happier person!
Good luck to you.
PS: If the new doctor hadn't taken me off them, I would have stopped the meds myself.