Is anyone taking Nuzyra for M. Abscesses or other?

I am taking my first dose of Nuzyra tonight. My dosage is 300 mg daily. Please share any updates since your adjustment with this drug. I was happy that it is oral so one less IV at home.
Everyone have a nice sunny day!

I was diagnosed with M. Abscessus and started on Arikayce, Nuzyra, and Linezolid last May. I went to NJH just a few weeks into the antibiotic regime and got some really good info. Both Nuzyra and Linezolid made me nauseated. I also set my alarm between 3 and 4 am to take the Nuzyra. I eliminated foods high in tyramine for the Linezolid but most important NJH took a series of blood draws and determined my Linezolid dose could be cut in half. Some people can reduce the Linezolid dose by 2/3. If you haven't done this-I would highly recommend it. So really worth getting a blood trough, and follow with 2 or 3 additional blood draws so they can chart how it is metabolized. Also, my insurance denied the Nuzyra coverage (I was taking samples), so NJH was going to put me on clofazamine and change my Arikayce to inhaled Amakacin due to loss of voice. Fortunately, during the 2nd week of my NJH evaluation, I was told I could go off all meds and they would "wait and watch) due to my low M. Abscessus "count".

I was on oral Nuzyra, Linezolid, and IV Amikacin in 2022 for abscesses. I would set my alarm for 4 am to take the nuzyra because I didn’t want to deal with the fasting during the day. I didn’t have a problem with it, but was taken off all meds after 5 months due to neuropathy in my toes - presumably from the Linezolid. I don’t know if I ever totally got rid of the abscessus, because my dr monitors me with ct scans. The scans show that I haven’t gotten worse, and the areas wax and wane. I feel fine except coughing. The 7% saline is helping a lot!

I had nausea and vomiting with Nuzyra until my ID ordered Zofran to be taken 20-30 minutes before Nuzyra. Worked wonders. Took zofran upon waking, 30 minutes later Nuzyra, waited 2 hrs then took Azithromycin, then Clofazamine at bedtime. Morning routine would have been difficult if I was not retired. I'm 82 and since Medicare capped drug costs at $2000. starting 2025 I enrolled in MP3 plan (Medicare prescription payment plan) which spread the cost out over a year so I felt I could handle the Nuzyra cost. I'm currently off all meds after 18 months of treatment. Will recheck chest CT in 6 months. Over the course of treatment I've had to stop Linezolid due to anemia, inhaled Arikayce caused an allergic reaction and azithromycin caused some hearing loss which did resolve after stopping the drug. I kept in close contact with my ID whenever I had symptoms of side effects and he would change drugs. I had lab work every 2-3 weeks to monitor liver and kidney function. I'm feeling well but still some fatigue which I hope will resolve in time. Good luck with your treatment. We all react differently to this drugs but keep your doctor informed of any changes.

I wish I could say the same. Zofran did not help me at all. I asked my doctor if there was anything better out there for nausea and she told me that Zofran is the best. I'm sure happy it worked for you and good luck with continued rechecks.

Thank you Kathy. Now I just hope to avoid reinfection..
Jean

I hope you do as well. I've taken some precautions in house: turned up water heater temp, changed shower head, no hot showers, installed UF under sink filters for kitchen, and wear masks when doing outside work. I was diagnosed with MABC and per my doctor, the recurrence/reinfection rate is 50%. I'm testing negative now for 3 months, but last month got a new nodule.

I took Nuzyra (along with clofazamine and Arikayce) for abscessus for about 15 months, using zofran 30 min before the dose. I ate an early dinner and took the Zofran and Nuzyra at bedtime. If I didn't get the timing right, I'd have nausea and vomiting. Once in a rare while, I'd have it anyway. The Nuzyra was held a couple of times and finally discontinued because of elevated liver function values on blood tests. The Arikayce was thought to cause elevations in my creatinine, so hitting kidneys. My culture never cleared, but clinically I improved and my CT scan has been stable so far. Fingers crossed and continuing to do airway clearance twice a day along with exercise. Best of luck to all of us!

Sorry to hear you have a new nodule, seems to be a vicious cycle sometimes.
I've read phage therapy is being tested at a few different hospitals, it would be wonderful if this therapy helped us. Good luck.
Jean

Thank you! Yes, it's a vicious cycle. I'm hoping it's just mucus, which my doctor did say was a possibility. I've only heard bits and pieces about phage. I'm going to join the NJH NTM/BE conference via zoom tomorrow and hope they will discuss the phage therapy. I should get a video sent sometime after the conference and will upload it here.