I’m so sorry you’re dealing with this. I have not had to make these decisions yet since my MAC cultures were negative. I’ve been on the site for about 18 months. A couple bits of info might be helpful to those responding. Do you have cavities? Are you in the care of a team that sees a lot of MAC patients?
Good luck to you.
Hello, thanks for your response. Some additional information is that I am unsure if they said I have cavities or not. There are for sure nodules. My team does treat a lot of MAC patients and consults with NJH regularly. All courses of treatment so far have been per NJH’s recommendations.
Hello, thanks for your response. Some additional information is that I am unsure if they said I have cavities or not. There are for sure nodules. My team does treat a lot of MAC patients and consults with NJH regularly. All courses of treatment so far have been per NJH’s recommendations.
I’d suggesting making a list of your questions, especially your burning ones like risks vs benefit, and discuss with the doc you feel would take questions seriously. I asked about cavities because, from reading here, it seems those are important to get under control. You might be able to see your CT results on the portal.
It seems you have a good team. For me, that a key to trusting their judgement. You could also ask about starting the drugs a bit more gradually to see how you tolerate them-may not be desirable.
Hopefully, others will chime in. Sometimes, posts can get lost in threads.
I’m new to all of this so please bear with me. I was diagnosed in January, 2024 with M. abssessus and bronchiectasis accidentally after abnormal chest CT and subsequent BAL. I was asymptomatic until this summer (July I think). Symptoms began with cough, fatigue, night sweats. Infectious Disease and Pulmonary advised early intervention with 3 antibiotics (not sure if they were the “Big 3”) Azithromycin, omadacycline, and linezolid. Due to contraindicated linezolid and current Wellbutrin, and having serotonin syndrome after 2 days, switched to tedizolid. Tedizolid gave me neuropathy in feet after 1 month so it was d/c’d. 2nd BAL showed MAC and inhaled amikacin was added daily to already daily azithromycin and omadacycline. Have had baseline and 1 follow-up hearing test. All good there. Now being advised to add ethambutol with a follow up BAL in 1 month. My concern is this… just in past few days my vision in my right eye has declined so I am unsure about adding ethambutol. I am scheduled for baseline eye exam this week. Not sure what is the vision decline culprit. (To complicate further, I have also been on Wegovy for weight loss and am taking my goal weight maintenance dose.) I feel like I have a good team of doctors but also feel kind of left in the dark as to prognosis, which side effects are concerning for each med (besides the obvious vision, hearing and neuropathy, not to mention the torturous serotonin syndrome I experienced). There are so many overlapping effects and I feel miserable. I don’t feel like I have gotten enough education on expectations, prognosis, and risk/benefits of this multi drug therapy. I asked my ID doctor if this were his own wife would he be recommending such treatment. Yes was his answer. I just don’t know enough to even know whether to continue to treat and just suck it up for the 12-24 months or what the alternatives even are. If it makes any difference I am a 55 year-old female ex-smoker for over 20 years. If you’ve read this far, thank you. Any and all feedback appreciated.
First your statement of "not sure if they were the “Big 3”. My understanding and if you listen to doctor Daily's, of NJH, video regarding when to treat or not treat the big three are Azithromycin, Ethambutol and Rifampin, Not sure if the ones you mentioned also go by another name but are either the same or similar in terms of what they have in them. with regard to the ones you mentioned being prescribed for you. It might help if you could have the pulmonologist tell you the differences and why one over another so that you could understand the difference and the why of one over another.????
Also, do you get to see what National Jewish is telling your pulmonologist to use and do? I take it you had much testing at National Jewish and have a lead doctor there communicating with your local pulmonologist doctor. You might be able to message your lead doctor at NJH for confirmation if you feel that would help and to also answer some of your questions and as well to be sure they know all medications that have been suggested for you to take for all your health problems and reasons for being on them since they are working with your local pulmonologist...It might help with full communication ???? Glad you knew to have baseline tests before starting the antibiotics. Hope my sharing of my two cents worth of thoughts is comfortable for you.
Barbara
First your statement of "not sure if they were the “Big 3”. My understanding and if you listen to doctor Daily's, of NJH, video regarding when to treat or not treat the big three are Azithromycin, Ethambutol and Rifampin, Not sure if the ones you mentioned also go by another name but are either the same or similar in terms of what they have in them. with regard to the ones you mentioned being prescribed for you. It might help if you could have the pulmonologist tell you the differences and why one over another so that you could understand the difference and the why of one over another.????
Also, do you get to see what National Jewish is telling your pulmonologist to use and do? I take it you had much testing at National Jewish and have a lead doctor there communicating with your local pulmonologist doctor. You might be able to message your lead doctor at NJH for confirmation if you feel that would help and to also answer some of your questions and as well to be sure they know all medications that have been suggested for you to take for all your health problems and reasons for being on them since they are working with your local pulmonologist...It might help with full communication ???? Glad you knew to have baseline tests before starting the antibiotics. Hope my sharing of my two cents worth of thoughts is comfortable for you.
Barbara
Thank you Barbara for your response. Like I said, I am very new to this so my questions may seem a bit naive. I am learning a lot. My team consists of pulmonologists, and infectious disease specialists who are consulting with NJH. I have not had any testing at NJH. I have only recently understood the connection my ID doctor had with NJH. There is full disclosure of all my medical conditions and medications I take for them. I was inquiring as to what exactly the Big 3 were as reading through this forum is the first I’ve heard the term. I am currently on azithromycin, and we are adding ethambutol. Additionally I have been on ARIKAYCE for 28 days, and I take omadacycline. I will ask ID why omadacycline and ARIKAYCE rather than rifampin if that is normal protocol. I have failed two other antibiotics and rifampin may be in the same class and may be thought by my providers not to be effective in my situation. It may also be that it could be contraindicated with other meds I take or that I am allergic to another antibiotic in the same class. I am allergic to several different antibiotics. These are all questions I intend to bring to my team. Again, thank you for your response. It has given me some things to consider.
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Hello, thanks for your response. Some additional information is that I am unsure if they said I have cavities or not. There are for sure nodules. My team does treat a lot of MAC patients and consults with NJH regularly. All courses of treatment so far have been per NJH’s recommendations.
I’d suggesting making a list of your questions, especially your burning ones like risks vs benefit, and discuss with the doc you feel would take questions seriously. I asked about cavities because, from reading here, it seems those are important to get under control. You might be able to see your CT results on the portal.
It seems you have a good team. For me, that a key to trusting their judgement. You could also ask about starting the drugs a bit more gradually to see how you tolerate them-may not be desirable.
Hopefully, others will chime in. Sometimes, posts can get lost in threads.
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1 ReactionFirst your statement of "not sure if they were the “Big 3”. My understanding and if you listen to doctor Daily's, of NJH, video regarding when to treat or not treat the big three are Azithromycin, Ethambutol and Rifampin, Not sure if the ones you mentioned also go by another name but are either the same or similar in terms of what they have in them. with regard to the ones you mentioned being prescribed for you. It might help if you could have the pulmonologist tell you the differences and why one over another so that you could understand the difference and the why of one over another.????
Also, do you get to see what National Jewish is telling your pulmonologist to use and do? I take it you had much testing at National Jewish and have a lead doctor there communicating with your local pulmonologist doctor. You might be able to message your lead doctor at NJH for confirmation if you feel that would help and to also answer some of your questions and as well to be sure they know all medications that have been suggested for you to take for all your health problems and reasons for being on them since they are working with your local pulmonologist...It might help with full communication ???? Glad you knew to have baseline tests before starting the antibiotics. Hope my sharing of my two cents worth of thoughts is comfortable for you.
Barbara
Thank you Barbara for your response. Like I said, I am very new to this so my questions may seem a bit naive. I am learning a lot. My team consists of pulmonologists, and infectious disease specialists who are consulting with NJH. I have not had any testing at NJH. I have only recently understood the connection my ID doctor had with NJH. There is full disclosure of all my medical conditions and medications I take for them. I was inquiring as to what exactly the Big 3 were as reading through this forum is the first I’ve heard the term. I am currently on azithromycin, and we are adding ethambutol. Additionally I have been on ARIKAYCE for 28 days, and I take omadacycline. I will ask ID why omadacycline and ARIKAYCE rather than rifampin if that is normal protocol. I have failed two other antibiotics and rifampin may be in the same class and may be thought by my providers not to be effective in my situation. It may also be that it could be contraindicated with other meds I take or that I am allergic to another antibiotic in the same class. I am allergic to several different antibiotics. These are all questions I intend to bring to my team. Again, thank you for your response. It has given me some things to consider.
Amy