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Are you thinking about going on the 3 antibiotics for MAC?
Are you considering antibiotics for a MAC infection? If so, I want to share with you that for the past 2 years I have been on the patient advisory committee for the MAC2v3 study.
The study is designed to test whether two drugs (azithromycin and ethambutol) are as effective in treating MAC as the “big three” (azithromycin, ethambutol, and rifampin).
The trial is for 12 months. To participate, you need to be able to produce a sputum sample.
They currently have an amazing network of 30+ physicians (including mine!) at 22 sites from Hawaii to New York to Texas to Toronto.
And, great news!!!
Patients can stay with their doctor and be referred virtually for this study without the need to travel to test sites.
If you would like more information, they have a website mac2v3study.org and I have found them to be excellent to work with. Currently, there are about 400 enrollees and they need another 100 to complete the study. Take a look at their website and email them with your questions.
Do you prefer to ask me questions or have me e-introduce you to the team? Can do! Just message me and let’s start the conversation.
Warm regards,
Linda Esposito
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Hi, wondering what happens if you start to have serious side effects? I assume you can leave the study at any time, correct? I believe the ethambutol is the med that can cause permanent eye sight damage. Are they considering a separate study using the Azithromycin and Rifampin? If it came down to me having to use 2 drugs I would rather lose my hearing versus my eyesight. I may have the two mixed up. I just know my Dr. told me to see my eye Dr. on a regular basis if and when I start the Big 3. Thank you
I suggest reaching out to the study investigators for them to answer your questions. I know a while back a doctor told me rifampin doesn’t do much of anything but cause side effects. So I think that’s an issue as well though I do understand your concern regarding hearing and vision.
Best,
Linda
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1 ReactionRifampicin was used for the treatment of tuberculosis but in MAC patients, it is used in combination therapy to prevent the development of resistance and to shorten the length of treatment. I sure hope 2 vs 3 is an advantage.
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1 ReactionMe too!
Thank you Linda. That's interesting that a Dr. said Rifampin doesn't do much.
It guards against the bacteria becoming resistant to azithromycin. And, perhaps confers added antibiotic protection. That’s what this study is trying to figure out. How important is rifampin?
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3 ReactionsTime was short between my inquiry and push by Dr to start big 3. I started meds & am tolerating fine. Therefore I did not think I could be part of the study.
Yes, sometimes it just doesn’t work out.
Becleartoday, I was on rifampin for 18 months along with ethambutol and Avalox. Also two IV drugs. I’m sure rifampin helped in getting rid of the two NTMs I had at the time. I now have MAC and can not take azithomycin. So I am just hoping it stays quiet.
I hope so, too! Keep your body strong by maintaining a healthy weight, airway clearance, and stress reduction.