Considering treatment for M. Abscessus

If you have abscessus you should not take Arikayce by itself because abscess could become resistant to Arikayce. You need to take at least 1 or 2 other antibiotics to not become resistant. It is my understanding that Arkiayce does somehow impact abscessus. This is part of my Delima. If I'm determined refractory for MAC, the next step is to add Arikayce, and if I do that I must also add the other antibiotic treatments for abscessus.

Hello Cattleya, my sputum has been positive for M. Abscessus since 2018. I previously had MAI and MAC infections. My pulmonologist prefers to treat only if or when I become ill since the treatment regimen can be severe and may not be successful. If you feel pretty good and are able to exercise that much, then you can decline treatment in favor of clinical monitoring.

Like you, I want to stay well enough to never need treatment. In other words, I'm willing to live with the colonization if it allows me a fairly good quality of life. I was hospitalized recently with an upper respiratory bacterial infection and my ID doctor was ready to start treatment: IV imipenem, IV tigecycline, oral clofazamine and linezolid along with phage therapy as the initial treatment. I asked to hold off until the acute infection resolved and afterwards I gained a little weight and started strength training with a personal trainer and feel relatively well again. So we're back to monitoring because I don't meet clinical criteria for treatment. I feel like I dodged a bullet. I hope you find this helpful. I wish you the very best.

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.

Hi! Thank you so very much for your reply! I have similar thoughts about my situation. I didn't test positive until 2022. Before that I had M. Aviens (much easier to treat) but apparently that just resolved itself and I tested positive for M. Abscessus later that year after moving to North Carolina. I also had a bad upper respiratory infection this year and it completely resolved after a course of Levaquin. My understanding is that the decision to recommend treatment is based on clinical presentation, radiography, pulmonary function and sputum. I was told that my CT scan and pulmonary function tests were actually improved over the last year and yet my doctor is recommending medication because it's my 3rd positive sputum and he's questioning the read on the CT scan. If you don't mind my asking, how are you doing on the pulmonary function test and radiography? I'm trying to gather as much information as I can before my appointment in January. It's so hard to be objective when, like you said, you want so much to never have to be on these medications. Great that you're back to monitoring. Also, do you mind sharing how old you are? I'm 76.

Has anyone gone through successful treatment for M. Abscessus infection? Would appreciate your sharing your thoughts and experiences.

Hi Cattleya, I too had M. Avium Intracellulare (MAI twice and then MAC) prior to testing positive for M. Abscessus. Treatment for the most recent infection included IV amikacin for six months until I developed tinnitus. But I also developed mild cognitive impairment which resolved about 90-95% by a year post-treatment. My pulmonologist also prescribes Levaquin for upper respiratory infections and it works really well every time.

If your pulmonary function tests (PFTs) and CT scan are improved over previous, and you're feeling well, then my understanding is you don't meet criteria for NTM treatment. It's definitely worth a discussion with your doctor at your next visit. While my ID doc wanted to treat when I got sick, my pulmonologist did not, and so we waited until the acute infection resolved and then I felt better again. They work together and agree mostly, but pulmonologist prefers bedaquiline and omadacycline to tigecycline and linezolid as tigecycline can exacerbate malnutrition. And they both agree that while I feel well and am functioning that it's better to wait.

My PFTs improved slightly when I began an inhalent medication (Symbicort) which calms inflammation. PFTs have been stable for several years (at 52% capacity). I have a slight enlargement of a small cavity (2-3cm) and "chronic extensive lung scarring is not appreciably changed" over the past year, and similar over several years. I practice airway clearance (chest vest, nebulizer w/saline and albuterol, spirometer and PEP) and am feeling much better since I began weight training. The sputum dries up and coughing is due to post-nasal drip only so I manage environmental allergies to keep that in check. No night sweats.

Weight training and Pilates or Yoga are so much easier than cardiovascular training which gets me sob if I try to jog. I just walk fast on a treadmill and get HR up to the 120s for a while. You're a lot fitter than I am right now. I'm 62, not working but hoping to resume part-time work virtually. Thanks for asking.

How are your PFTs? Do you have a cavity or two or just nodules or scarring or plugging?

There may be more information on the Facebook group. I'm not on it and don't know its name but you might learn more there. If you can, let us know how your appointment goes in January.

Sue. Do you still have mac

Arikayce is also used for the treatment of Abscessus. If one uses it alone while treating MAC, the Absessus could become resistant to Arikayce. So you must also fully treat Abscessus if you need to use Arikayce for MAC. Abscessus responds to different antibiotics than MAC, so you need to add those specific antibiotics to the total regimen. Thus you must treat both at the same time if adding Arkiayce. Hope this clarifies.

Thank you so much for this detailed reply. It helps so much to hear how others are coping and it gives me ideas about what to discuss at my next appointment. I don’t even have the answers to your questions off the top of my head but they’re good questions and l will be sure to look up the answers. I’m not doing all the air clearance you’re talking about, just saline Nebulizer, nor am I using any inhalers. I will be sure to ask about those too. Again thanks for this great information.

Are you cured??