1. < MAC & Bronchiectasis

Considering treatment for M. Abscessus

Posted by cattleya @cattleya, Oct 14, 2024

Hi. My doctor is recommending antibiotic treatment for M. Abscessus as I have had 3 positive sputums. I feel pretty good though. Some coughing at night, throat clearing, but able to walk 2 miles 4x/week, use treadmill and elliptical at gym and play pickleball 2x/week. I do get winded walking up hills and have trouble walking and talking. I have to pace myself at pickleball. I'm 76 and afraid of side effects and destroying quality of life if going on these meds. I'm VERY medication sensitive, can't tolerate most antibiotics for 10 days even. I've had terrible, months long reactions to Covid vaccines (had 5 of them) but did well when I got Covid in September (17months after last booster). I'm also worried about ability to function while on these meds since I take care of the household, do all the shopping, cooking, cleaning, finances and take care of my 80 year old husband. I'm interested in hearing from anyone who has gone through the treatment and learning from their experience and would really appreciate your response. I also hope that you are doing well.

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kathyjjb | @kathyjjb | Mar 17 11:26pm

Hi, I'm looking for info on which antibiotics combination are currently being used for MAC Abscessus. Any successes? I had my first appointment with an ID doctor and she told me she would put me on Tetracycline, Inhaled Amakacin, and one that starts with "R". I just read a study that says MAC A. has a Tetracycline resistance 500 times more than macrolides-which abscessus is resistant to. I have an appointment at NJH but it's not until the end of May and I just got slammed with something. My middle and lower lungs ache, coughing up green sputum. I'm wondering is this the MAC rearing or maybe I have a secondary infection. So now, contacting ID doctor to possibly start treatment. I'd like to have more info on what is generally used before I talk with the ID doc. Thank you!

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pacathy | @pacathy | Mar 18 5:44am

I don’t have MAC, just mild bronchiectasis and have not experience with treatment, but will bump it up for you.

I found these guidelines from 2020 from the ID Society. There was a big meeting on bronchiectasis in last month and updated recordings should be available soon.
https://www.idsociety.org/practice-guideline/nontuberculous-mycobacterial-ntm-diseases/#FullRecommendationsforSpecificPICOQuestions
Scroll to XIX for treatment of abcessus. . It’ll give you a start.

You could check the lab portal. They generally do sensitivities on the sputum you sent. That might be why doc is ordering something unusual. Speaking of sputum, have you sent a new one since you started feeling bad. Ask ID doc or your pulmonologist about doing that if you don’t have a standby order. I’d contact soon.

I hope you get help soon.

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kathyjjb | @kathyjjb | 6 hours ago
In reply to @cattleya "Hi. Thanks for your reply. I'm not sure yet what my medication regimen would be but..." + (show)
@cattleya

Hi. Thanks for your reply. I'm not sure yet what my medication regimen would be but I was told it would be some combination of IV Amikacin, IV Imipenem, oral Linezolid, oral Omadacycline and inhaled Arikayce. I have an appointment in January to discuss and am just trying to educate myself about the process. I'm wondering if anyone has gone through this treatment successfully and what the process was like. I also wonder at what point they made the decision to take the medication. I honestly feel well. I use a saline nebulizer 2x/day and don't cough very much. I can feel some shortness of breath walking up hills and playing pickleball but otherwise no sob unless I'm exerting myself. I think I understand your dilemma. These seem to be very powerful drugs with serious side effects. It's a big decision. I wish you all the best in making your decision. Please let us know how it goes.

Jump to this post

How are you doing? Did you start treatment for the MABS? I also have M. Abscessus and just started treatment today, so too soon to give feedback. I too was feeling fine and then it hit me, I felt slammed. My ID doctor has me on Arikayce daily, oral Linezolid, and oral Nuzyra. I'm going to NJH this month and my doctor contacted the NJH doctor and discussed my treatment plan. Both thought it was a good route for me. I'm really spacing out my doses as much as possible. Linezolid at 6 AM and 6 PM with food, Arikayce at 11:30 am, and Nuzyra at about 10 PM. I'm taking Nuzra at bedtime since it's best to fast 4 hours before and 2 hours after. I'm just hoping that I will start to feel better soon.

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