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Consequences of discontinuing treatment for MAC
I was diagnosed with MAC and began taking the Big 3 and using Arikayce via a nebulizer daily in mid-December 2024. I tested negative for MAC in March 2025 so my ID physician discontinued the Arikayce but told me I would be taking the Big 3 for 12-18 months longer to prevent return of the MAC infection. In June of 2025, the eye physician who had been following me due to taking Ethambutol, cautioned me to lower the dose of Ethambutol due to a significant loss of my peripheral vision. When I mentioned this to my ID physician, he took me completely off Ethambutol and prescribed me to resume taking Arikayce daily. I have noticed the past couple of months that my hearing loss has increased substantially. Even though I already have a hearing loss and have worn hearing aids for several years, my hearing loss has increased recently to the point that I am unable to follow a conversation with another person even when my hearing aids are turned up to the highest level. In addition, I am only able to understand what is being said while watching a movie by reading captions on the bottom of the screen. This has become a vey serious issue for me in relating to others and has greatly affected my quality of life. I am wondering if the resumption of using Arikayce daily can be the cause of my increased hearing loss. I contacted my ID physician about this on Monday, (10/13) but have not yet received a response back from him. In the meantime, I voluntarily stopped the Arikayce treatments until I receive word from him. I am considering discontinuing treatment altogether, as issues with my vision and hearing have been much worse than the phlegm and coughing symptoms I was experiencing from MAC before beginning treatment. On the other hand, I am concerned of the consequences of ending treatment early. I would appreciate any suggestions, as I feel I am at a "Catch 22" situation.
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Terrible that you are suffering with these side effects. You are wise to consider stopping the drugs so as to halt further side effects. I'd be considering the same thing. Have you considered getting a second opinion? Maybe virtually from NJH? That way they can look at your overall health, age, CT scans, sputum cultures, colony counts, type of NTM, blood work etc and counsel you. Maybe they know of a drug trial that might be right for you. I don't know I am throwing out ideas in case they help you think it through. I'd also touch base with my PCP. I sure hope others will weigh on this important decision.
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2 ReactionsI agree with Scoop, possibly you can get into NJH. I can't believe your ID doctor has not responded since Monday, especially while being on those drugs. My local ID Dr had all my messages going through her nurse and I always had a response within 24 hours. Even NJH responds within 24-48 hours. Are you nebulizing 2/day with 7% saline? Airway clearance exercises during or after (or both) nebulizing? I can't stress enough how important those steps are to help reduce the bacterial count. I was on Arikayce daily for 3 weeks and when I got to NJH, they told me to go to 3/week the first day I was there. Fortunately, I was able to go off completely prior to leaving NJH due to a super low NTM count. I'm so sorry you are going through this and hope you consider reaching out to NJH.
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1 Reaction@machelp Besides the other suggestions from our helpful group here for upgrading the care you are getting, I was wondering if your hearing is being checked professionally? You didn't mention that, but typically when being treated for MAC this would be done every 3 months or so. I was taken off treatment with azithromycin, ethambutol and either Arikayce or placebo (in a study) immediately when my hearing started to show some decline. Docs will evaluate after I have been off meds in a few weeks. Getting hearing tested could give you more answers if that hasn't happened.
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2 ReactionsDon’t stop the treatment. It could damage your lungs even more. Keep bugging your doctor.
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1 ReactionUnless you have symptoms other than those you have stated, I'd go off the meds altogether. I went off the Big 3 almost 3 years ago due to side effects and have been stable with MAC/BE and a lung fungal infection over those years and feel quite well considering the aforementioned diseases. I continue to be watched by my ID doctor at NJH and see him every 6 months for a check up. I use only the Aerobika twice daily (w/o saline), I walk 1-2 miles daily and am on a Mediterranean diet with added dietician-prescribed poultry for more protein. Everyone is different but sometimes the treatment is worse than the disease(s) itself. I have a pretty good quality of life, not ideal and quite different than before the diagnoses, but I would take this life over that with the drugs. Wishing you the best as you move forward.
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2 Reactions@kathyjjb who is your doctor at NJH? I cannot get any response from my Dr. at NJH, nor can my local doctor. I am surprised to hear you get responses from NJH in 24-48 hours. Shocked actually. I wonder why there is such disparity between our experiences.
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1 ReactionMy Primary NJH Dr is Michele Haas. She is an ID doctor in the Infectious Disease Dept. Either she will respond or someone from her department. I did see a pulmonologist when I was there and messaged her once and it took a while to get a response, but it wasn't urgent. I would recommend you message or call your NJH Ambassador, my ambassador has been very helpful in the past.
Maybe it's due to urgency?
@scoop Do you know if NJH takes Medicare? My insurance is Medicare and Tricare for Life.