Starting Ethambutol

Gee whiz...so many things to think about, and sometimes fret about. I've been on the THREE for 12 months. My eyes frustrate me a LOT, and I've lost more of my hearing. But I stuck it out for a year. I just recently changed lung doctors; waiting on him now...so I'm not sure what my next step is. I really want to stop the meds though. I realize I need another CT of my chest, and probably another bronchoscopy, which I dread, so I really have no idea what shape my lungs are in now. I was diagnosed when they were looking for something else, and found the nodules in my lungs in March of 2022. I greatly appreciate this site; have learned so much more than my first lung doctor was telling me!

He is waiting for my last 3 sputim tests to come back as I have been on the meds for a year next month and may add or change the meds when I see him in 2 weeks. Will let you know.

Thanks

I haven’t had any tests but I am getting another CT on Sept 13th and go from there. I went to a ID doctor in OKC and she had the same concerns as everyone about taking only Azithromycin. I agreed to stop taking it after the CT and see if my symptoms returned by the time I see her again on
Oct 3. I haven’t decided whether to take all three antibiotics or not. She said I could do whatever I choose and she would continue to prescribe Azithromycin if I choose that alone but she doesn’t suggest I do that. I really don’t have bad symptoms. I have night sweats, slight dry cough, and fatigue but since I started the Azithromycin all the symptoms has lessened. I am still taking everything I can to build my immune system and from these posts I am fixing to start garlic pills rather than eat it everyday.
I am still worried about my eyes. She said an eye test every month and my eye doctor said an extensive test monthly and medicare might not pay for it. He is concerned about my eyes.
All that is making me shy away from the other 2 antibiotics. I will know more after 2 weeks off Azithromycin.
I am leaning toward no additional antibiotics.

I was getting my eyes checked monthly when I was on the ethambutol....my dr suggested every three months, but I was scared to death to wait that long. I had no peace. Now that I am off the meds, no more monthly eye checks. the tinnitus from the azithromycin seems to be waning some.....I hope it goes away totally in time. i don't like it at all. some people don't get any side effects...it's such an individual journey, yet the same in many ways.....????

Talk to your ophthalmologist about Medicare paying - they have to code it a certain way that indicates it is necessary due to a medical condition and the drugs you are taking. My eyes were tested every 3 months for 2 years with no issue.
Sue

Renee
Interesting, I also am in OKC.
I was diagnosed in August of 2022 with BE by my PCP.
First sputum tests done at NJH in October 2023. The sputum tests did show some infection.
I now go to Tyler to the BE pulmonologist specialist there. I just had a CScan showing some good changes and one new area of mucus plugging in the lower left lobe. The PFT is off the scale in the right direction.
All sputum tests done since 2023 have come back with MAI infection with all to my understanding showing mild infection. However, I was just given prescriptions for Azithromycin and ethambutol to take 3x a week. I also am one since childhood, my mother's beliefs, who prefers to supplement with vitamins. Therefore I will feel comfortable with taking the vitamin supplements on the days I am not taking the antibiotics. I haven't started yet, I want baselines of my eyes and hearing etc. before starting. My worst symptom is the constant need to clear my throat of what feels like and appears to be a combination of clear mucus, saliva, foamy bubbly moisture and sometimes obvious colored mucus and mucus plugs. I guess one could say that that is somewhat of an exacerbation, the constant need to clear the throat nearly all day and upon waking any time during the night. I just wish I knew for sure if it is the BE causing all this or one of the other possible health problems, hiatal hernia and therefore possible acid reflux (silent reflux for me...due to none of the obvious symptoms). Hard to know for sure. The need to clear the throat is worse immediately after eating. No fever, chills, sweating etc. etc. at this time.
Your post was begun in July of 2023. Would you have time to let me know what you did, what you do and did not do etc. and how you are doing etc. etc.

What doctor do you see here in OKC or is your pulmonologist one at NJH, Tyler, Mayo or other?