Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC
I have just begun my drug therapy for MAC. Question, does anyone have any advice on how to take the cocktail of azithromycin, ethanbutol, & rifampin, and suffer the least discomfort. I am taking my meds at night 4 hrs PO after I go to bed (set alarm clock and wake up to take) 3 days a week. I was very discouraged by pharmacist and ID doctor on how brutal the meds are to the system.
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Hi. Have deligently followed group since being diagnosed with bronchietasis and MAC in 2017. After recovering from initial bout it was agreed among pulmonologist and infectious disease doctor to monitor closely with CT scans every 6-8 months rather than treat because of long history of severe drug allergies and atrial fibrillation. In June 2020 was put on oxygen 24/7, developed pneumonia (not Covid related) in December 2020 ( 3 weeks hospitalized, 2 in ICU and 9 days on ventilator). Grateful and blessed to have survived. Started nebulizing Atrovent twice daily. Released, felt better than had in years until June 2021 when shortness of breath and oxygen levels deteriorated through October. CT showed severe increase in bronchietasis and infection. Currently little oxygen in lungs despite running oxygen at 5, out of air walking 3 feet. Decided it was time to treat MAC with hope of improving oxygen levels. The plan was Ethanbutol, Zithromax and Arikayce. Because of heart medication, Sotalol, cannot take Zithromax, so new plan was devised using an old drug designed for leprosy, Clofazimine, but again that interferes with Sotalol. Has anyone treated MAC with Arikayce alone which is now being discussed as a possible plan. Please help and appreciate all comments.
So sorry this is happening.
Sotol is a beta blocker and is used by those of us with a fib to keep the heart rate in a some what normal range. I took metoprolol, another beta blocker for more than 10 years. My electrophysiologist (cardiologist specializing in heart arrhythmia.) left and I saw a new doctor. He immediately told me that with my lung diseases I should not be taking a beta blocker. He said that recent studies have shown that beta blockers can intensify exacerbations and lead to hospitalization. He wanted to change me to a calcium channel blocker.
I didn't Ike this doctor and also didn't want to change from metoprolol. I made an appointment with the head of the a fib program who had been stolen from another high rated teaching hospital and actually was the reason my first doctor left.
I Iiked this doctor very much and trusted him when he said the same thing about the interaction between beta blockers snd exacerbations of lung disease ( I have chronic bronchitis along with bronchiectasis). I also found a study online supporting this.
I have been taking a calcium channel block for a while now and my heart rate while sometimes high is the same as it was while using the beta blocker. It was not the pulmonologists who were aware of this. They had never even heard that beta blockers can be an issue. But beta blockers are not drugs they prescribe.
I recommend you talk to your electrophysiologist about switching from sotalol to a calcium channel blocker.
Wow, Rita, I had the same experience with metoprolol and my lungs.
In my case, it was an intractable asthma attack, at the time I was diagnosed with bronchiectasis & MAC, that led to the discovery - by the advisory pharmacist at my clinic - not a doctor. This was 4 years ago, when he was consulted to try to figure out a different combination of meds for the asthma. My primary & the pulmonologist were both surprised. But stopping the metoprolol controlled the asthma. Now I use a different med that doesn't control my heart rate as well, so have many episodes of too high heart rate, which brings on its own shortness of breath.
Sue
Hi, I've been on sotalol since 1997 for a ventricular tachycardia issue. Do you happen to have a link to the study? I've got an appointment with my EP soon and need to discuss this with him. Thank you!
Thank you. You provided great information. Seeing the cardiologist (electrophysiologist) next week and will discuss with him. Have you treated MAC? If so, how? Considering doing Arikayce only three days week for treatment. Any thoughts?
I did a quick search and apparently it is controversial. The research I surfed had to to with the benefits of beta blockers in heart disease not limited to afib. I believe your arrhythmia is more serious.
My electrophysiologist told me that there is no need to come in and I haven't seen him in a couple of years. I am very interested in what your ep says and hope you will share his comments.
Thank you Sue. I’d be interested in further information. What’s the difference between beta blocker or calcium channel blocker beyond the ingredients, or is there any? Sue, have you heard of anyone trying to treat MAC with Arikayce alone? Sure wish we all were folks that could take anything without issue.
I was on azithromycin and ethambutol for 14 months and Arikayce for 4 months and have been MAC free for almost two years. I'd have took but I believe everything was 3x per week. I have some very serious digestive problems (extensive radiation and butcher surgeon messed me up) so my doctor wanted me in the lowest doses that would still get the job done.
I'm very interested in what your ep says and hope you will share.
Albuterol is a beta agonist, metoprolol a beta blocker. So my 2 meds were working against one another, neither doing what was intended.
I am neither a doctor nor pharmacist, so I cannot tell you what the difference is between the actions of the 2 types of drugs.
There have been people on Connect treated with Arikayce after being unable to tolerate the Big 3, but maybe they can tell you how successful it was.
Sue
Thanks Sue. Really appreciate your help. Will definitely speak with cardiologist this week. Enjoy your weekend. Barb