Amikacin 8-12 weeks
Starting treatment in October. Mine is cavitary. They are adding Amikacin for 8-12 weeks. Anyone else have experience with it? Side effects? Results?
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@jamesthom101 Now that you have met with the ID doc, have some of your questions been answered?
Here is a current post by another member taking Amikacin -
https://connect.mayoclinic.org/discussion/abscessus-not-coping-well-with-treatment/
The good news is, the posters says they have now been up to working, which I know is one of your concerns. If you want to read about others' experience, at the top of this page, click on "MAC & Bronchiectasis." At our group's main page, there is a box called "Search discussions" where you can type "Amikacin" for a list of all discussions & posts mentioning the drug.
Tip: Look for fairly recent dates to find those currently using it.
You can also use this feature to find links to other discussions of interest, but this is not AI, so no long elaborate questions - just key words.
What other treatment(s) will you be starting?
Yes they have. Long road ahead. Cavitary so adding Amikacin. Should be starting treatment in October
Even though I’ve been on antibiotics, my CT scan has gotten worse. I now have multiple cavitations, some of them quite serious. I’ve seen another specialist, and it looks like I’ll probably need another bronchoscopy, a change in treatment, and IV amikacin. I’d also really like to know whether amikacin can help even when the cavitations are significant.
@jamesthom101 81 year old male, active, healthy, no meds prior to Mac. Had 2 large cavities. Azith, Ethamb, and IV Amikacin for 4 months and cavities closed significantly. No side effects from Amikacin. They should be checking your blood weekly for any abnormalities. I administered it at home with no problems. Nurse came weekly and changed dressing on Pic line and drew blood. Now on Arikayce and will do CT in Dec. No side effects so far. Good luck.
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1 ReactionTwo years ago, I was diagnosed with MAC with a large cavity (6 cm). I took the Big Three every day for 13 months and IV Amikacin 3x per week for the first three months. I did not have any side effects and continued to work full time throughout my treatment. The treatment was successful - my sputum cultures were negative after the first month, and after 6 months my CT scan showed the cavity had filled in. Best wishes to you!
Thank you — you have no idea how much relief and strength your support has given me. This illness feels overwhelming, almost like a death sentence at times, and knowing that the therapy can be effective gives me real hope of recovering. In Italy there are very few specialized centers for mycobacterial infections, but I managed to find one of the few that can administer IV Amikacin. On Wednesday I have my second appointment to plan the treatment. I hope not to experience significant side effects, as I am underweight (45 kg for 1.70 m) and physically quite fragile. Thank you again for your support.
@dantur
Inhaled Amikacin, which I was on for a full year, and then put back on for several months again, is far less likely to cause hearing loss than the IV amikacin, I believe. You may wish to ask your doctor about this. I understand that they may wish a more aggressive treatment, but you also need quality of life. I did get a little better with my cavitary MAC using inhaled amikacin. Some of the nodules shrank. I am not a doctor, but I do know the literature addresses this issue of possible hearing loss. My doctor wanted to go "full bore" and knock out the infection, but she admitted to me the hearing loss in a patient she prescribed this to.
Best reagards,
Mokie
Thanks! Yeah, I’d read that this is a pretty common side effect. Do you know how long it usually takes to show up? Or maybe it depends on how often you take it — every day or every other day? I think my doctor wants to put me on IV amikacin for three weeks and then probably switch me to the inhaled version. I should know more after my appointment next Wednesday.