MAC Abscessus, What Big 3 or 4 or 5 antibiotics are people taking?

Posted by kathyjjb @kathyjjb, Mar 20 9:36pm

I will soon be starting meds for MAC Abscessus that is macrolide resistant. Curious what people are taking and results?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Imipenium, Amikacin, Linezolid and Omadacycline. Cleared my Abcessus in 8 weeks but not the MAC .

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Hi Renee,
Thank you so much for your response. That's great news about the Abscessus but it's also confusing. I have Mycobacterium Abscessus , which from my understanding is a strain or sub strain. So once I get rid of the MAC Abscessus. it's my understanding that I won't have MAC. Did you have 2 types of MAC? Also, were you treated at a clinic that specializes in lung infections? My local Infectious disease doctor wants me to confer with NJH ID doctors, which is a little concerning since I've most likely had this well over a year and concerened about waiting another 2 months.
Thank you,
Kathy

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Hi Kathy, I’m sorry you are dealing with NTM.
Yes, I had both Abcessus and avium. I’m still taking meds for the MAC. Diagnosed 12/22 .
My treatment is not through a specialist but I’ve seen Dr McShane twice.

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Profile picture for reneemc @reneemc

Hi Kathy, I’m sorry you are dealing with NTM.
Yes, I had both Abcessus and avium. I’m still taking meds for the MAC. Diagnosed 12/22 .
My treatment is not through a specialist but I’ve seen Dr McShane twice.

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Thanks Renee! I like Dr McShane. I've only listened to her BE videos but I can tell she knows her stuff and is very compassionate. Good luck on with the avium, sounds like your specialist is aggressive at least with the abscessus.

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I too have been a patient of Dr. Pamela McShane since Jan '23. I am very sad that she is departing for the NIH Heart Lung, and Blood Institute.
Back to your question about meds, I was treated with IV amikacin 1g/4ml infusion, impenimem-cilastatin 500mg infusion, Tigecycline 50mg infusion. The morning after I saw Dr. McShane, a PICC line was inserted in one of my larger veins in my right upper arm. I was given Nebulizer instructions for a Respiratory Therapist and then received my first infusion. We live 377-400 miles from UT East Texas Tyler. I was set up with Home Health for weekly dressing changes and labs. My husband assisted me with the infusions.

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Just to clarify: Mycobacterium abscessus is not MAC. MAC is a different type of NTM (Mycobacterium Avium Complex). Correct me if I am wrong. I am newly diagnosed with M. Abscessus and bronchiectasis and waiting for resistance testing to see which antibiotics will work. I am amazed that Renee got rid of abscessus in 8 weeks. Hope you get rid of the MAC soon too, Renee. Wishing the same for all of us. Got totally blindsided by this diagnosis. Still processing.

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I'm so sorry "Payette". I too feel totally blindsided and I'm losing confidence in my pulmonary and worried about my local ID doctor who suggested 3 meds one being Tetracycline. She also said she would like to talk to doctors at NJH. I've read the Mycobacterium Abscessus is highly resistant to Tetracycline-which is why I'm worried. I won't get into NJH until May 20-30. They are testing my sputum but Banner already has as well. My strain (or substrain?) has the active erm gene (spelling?), so no macrolides. I also have one cavity but would not be surprised if I have 2 or more by now. I'm with you, I was really surprised about the 8 week clearing. I just need a doctor that is sure about which treatment I should start. I wish everyone the best.

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Profile picture for kathyjjb @kathyjjb

I'm so sorry "Payette". I too feel totally blindsided and I'm losing confidence in my pulmonary and worried about my local ID doctor who suggested 3 meds one being Tetracycline. She also said she would like to talk to doctors at NJH. I've read the Mycobacterium Abscessus is highly resistant to Tetracycline-which is why I'm worried. I won't get into NJH until May 20-30. They are testing my sputum but Banner already has as well. My strain (or substrain?) has the active erm gene (spelling?), so no macrolides. I also have one cavity but would not be surprised if I have 2 or more by now. I'm with you, I was really surprised about the 8 week clearing. I just need a doctor that is sure about which treatment I should start. I wish everyone the best.

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NJH seems to be the gold standard for expertise. Hope they set you straight. This stuff is SO complex.

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Profile picture for reneemc @reneemc

Imipenium, Amikacin, Linezolid and Omadacycline. Cleared my Abcessus in 8 weeks but not the MAC .

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I have never heard of Abscessus clearing in 8 weeks so that is really great news. I am going to NJH in May and I will mention that to them because usually the treatment is 12 or more months. I too have Abscessus and since my colony count is low NJH has not started treatment which I have been so thankful for. I hope you continue to stay free of the Abscessus.

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Profile picture for tconz @tconz

I have never heard of Abscessus clearing in 8 weeks so that is really great news. I am going to NJH in May and I will mention that to them because usually the treatment is 12 or more months. I too have Abscessus and since my colony count is low NJH has not started treatment which I have been so thankful for. I hope you continue to stay free of the Abscessus.

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I still test positive for MAC after 2 years of treatment. Currently on Azithromycin Ethambutol Clofazimine and Arikayce

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