Considering treatment for M. Abscessus

I tested positive for m. Abscessus on and off over a 6 month period. Currently being treated for both m. Abscessus and MAC with Azithromycin, Tedizolid, and Arikayce. Was originally on Linezolid. Side effects too toxic to manage. Too early to tell if Tedizolid will be an improvement. Have you had a CT scan? Did it show any cavity formation from the abscessus? There are great videos on YouTube by Charles Daly at National Jewish in Denver about when and how to treat NTM diseases.

Hi Marcia! Thank you so much for your reply. I will definitely watch the video. If you don't mind my asking, I'm curious about what toxic side effects you experienced with Linezolid. It's one of the medications being considered for me. I already have mild to moderate tinnitus and I'm afraid if it gets worse it would drive me nuts! (unless it was just temporary) I mostly get neurological side effects from antibiotics like tremors, headache, balance issues. I've had 2 CT scans but I don't really know what they showed in any detail. I plan to find out more. I've been being "monitored" for the past 18 months and have an appointment in January to discuss possible treatment. So I'm trying to do my homework. How long have you been on your meds and how are you feeling? Are you with the Mayo Clinic? I'm with the brochiectasis clinic at UNC in Chapel Hill NC. Not sure if I would want a second opinion at Mayo.

Hello.
I have been on the meds for 2 months. I was on the Linezolid for about 5 weeks of that time. My platelet count dropped and I became borderline anemic. I was nauseous and had diarrhea. I lost 5 pounds. I did not feel well. Replaced the Linezolid with Tedizolid almost a week ago. Too early to tell if it will make a difference. I have lab work this week. I am having low back pain and side pain, perhaps a “minor” drug interaction with my statin. Going without it for a few days to test theory.
I am not with Mayo Clinic. And BTW I am 74 yo.
Hope that helps.

Curious, where do you treat for the MAC and Abscessus? My current provider usually treats with 5-6 medications, one being IV. I don't want to be tied to IV treatments. Are any of these IV?

I live bi-coastally. I am being treated by an infectious disease dr at Cedars-Sinai in Los Angeles and a pulmonary dr at Georgetown in DC. We may yet have to go the IV route but not yet, especially as I don’t consistently test positive for abscessus as I do for MAC (a moderate case). I also do airway clearance, of course. Where are you being treated with 5-6 drugs?

The video is terrific. I learned so much! Can't thank you enough!

I am only treating the MAC on 3 antibiotics 3x week. I on and off test positive for Abscessus so am not actively treating. I am not sure the 3x week is going to clear the MAC and if I do Arikayce I must take antibiotics for the Abscesses which are different than the ones used to treat MAC. I go to Johns Hopkins and they seem to treat both at the same time with 5-6 different medications, starting with IV for several months. Not fun and I don't really want to do that. That's why I asked where you were going because it seems they can treat both with 3 medications.

Why do you have to go on the drugs for abscessus if you go on Arikayce? My understanding is that Arikayce is standard protocol for refractory MAC along with the Big 3 antibiotics.

Because Arikayce is additive, it is prescribed in addition to the other antibiotics that sensitivity testing has shown to be most effective for your specific infection. It has not been shown effective against mycobacteria when used alone.

Understood. The individual I was responding to is already taking 3 drugs 3 x a week for MAC. I assumed she would add Arikayce to that regimen. I didn’t understand why if she was taking Arikayce that she would have to take drugs for Abscessus.