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Considering treatment for M. Abscessus
MAC & Bronchiectasis | Last Active: Nov 8 11:21am | Replies (40)Comment receiving replies
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.
Replies to "Hello Cattleya, my sputum has been positive for M. Abscessus since 2018. I previously had MAI..."
I have abscessus since 2021 with symptoms of wt loss , fatigue n loss of appetite. I was active doing sports n yoga and chose not to do the prescribed treatment of IV therapy and medication. I wrote to San Diego ID department requesting Phages therapy. I would be considered for the treatment if I had side effects from the protocol treatment.
I’m having SOB for the last 3 months and not able to play pickle ball. I’m doing saline and Abuteral inhalation . It’s a difficult decision to do the protocol therapy and worried about drug side effects. I don’t understand why myID Dr can only get the medication through a University??
Thank you for your support
Ann
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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.