Newbie here. Scared and overwhelmed by MAC treatment plan

Welcome to the group. I'm sorry you need to be here, but think you'll find a helpful and caring group. I haven't had MAC and can't answer that question, but a bit more info will help others answer your questions. There are a lot members who've had it and some tolerate it and others find it challenging.
How long have you had MAC? Are you starting meds separately...like adding 1/week? Are you being treated at a center that specializes in MAC and bronchiectasis? Do you have bronchiectasis and how severe is it?

Hi Newbie,

I was diagnosed with MAC and bronchiectasis in 2012. I’ve stayed relatively well until I enlisted on Encore/Insmed trial in Sept 23. The trial lasted 1 year and consisted of lipo amakacyn, clarithromycin and ethambutol. My hearing and eyesight was checked during trial and although hearing in left ear appeared to diminish, it was hard to attribute this to the meds. I knew I might be ‘placebo’ instead of amakaycin BUT didn’t realise until my hospital admission this week that if you don’t do at least 3 drug regime, there is a huge risk of developing antibiotic resistance. My clinicians really want me to start amakaycin/azithromycin/ethambutol/rifampacin but I’ve refused, for now, because of the fact that, as pointed out by lung consultant, only having 2 of the antibiotics could render me antibiotic resistant!! I don’t want to take ethambutol or rifampicin!! I’m 69 and only went downhill (in spread of Mac disease) AFTER trial finished. I’m angry, to be honest, because NO ONE outlined to me the risk of antibiotic resistance (if I was a placebo patient rather than a patient who was actually given amakacin)! I’m furious as this enlightenment about minimum drug regime has, potentially, given me a DEATH sentence! I’ve loved my life. I’ve kept as fit as I could. However, since end of trial in Sept 2024, my MAC disease has rapidly progressed. I’ve got a wonderful partner and loving family and friends BUT the Encore trial of amakacin has SEVERELY jeopardised my health! They know it….. and now I know it! Insmed never even wanted to purchase a small fridge for me to help with storage of amakacin. They’re only interested in PROFIT! Please think carefully about any trial…… you won’t always know the truth until it’s too late. 😢

@ccarter1004... I had a completely different experience with the antibiotics. 14 months on the Big 3 got rid of MAC. I've been free of it for 13 years. Any nausea was treated with ginger chews and ginger water. Now I am dealing with another deep lung infection with tobramycin and ciprofloxacin, alternating with azithromycin, alternating with IV antibiotic for 21 days. I take a nap after cough during postural drainage. I am retired and do my normal house chores with frequent breaks. I have added activities that help me rest, such as sewing , making jewelry, genealogy online, and puzzles. I listen to books on tape while lying down for postural drainage. On good air days, I spend one hour in my garden out of the sun. MAC made me retire since I could no longer work with children. I found other things to keep my mind busy. I hope you have a job working from home and are close to the hospital for IV infusions. My hospital is 60 miles away, but the trips were worth it for the great improvement in my lung health.

I'm so sorry you've had such a difficult time. I was diagnosed with MAC in 2012 also and had no trouble with the rifamprin, ethambutal, and clarithromycin. I'm concerned that you refuse to take the recommended drugs out of fear and/or anger. Get a second opinion on resistance and protocols. You are not doomed to die. I suggest a therapist to help with the anger and to cope with your fears. This support group has many helpful suggestions for you.

Can you be set up to do the infusions at home? Which IV antibiotic do they have you alternating?

Last fall, I was diagnosed with MAC with a large cavity. I started the Big 3 (daily) in November, plus 3 months of IV Amikacin 3 times per week. I was terrified of the disease and the treatment, like you are. I’m 54 years old, married with grown children, and I work full time in a job I love. I have had no side effects from the treatment and I’ve continued to work full time. The PICC line for the IV was inconvenient but I got through it. I did my IV treatments at work (when a nurse came once a week to draw blood and change my bandage) and at home at night on the days the nurse didn’t come. The IV pharmacy shipped the Amikacin and IV supplies to my house and provided the nurse. My sputum samples have been negative since December and my CT scan in June showed the cavity has filled in. I will continue to take the Big 3 every day until this December. I recently started using a nebulizer with 7% saline every day for airway clearance to hopefully reduce my chances of ever getting MAC again. This forum has been a godsend for me. I’ve never posted before but thought you may want to hear from someone who has had a positive experience with the treatment plan you’re facing. I have been fortunate that I’ve been able to continue to live my life, work, and do everything I was doing before my diagnosis throughout my treatment. Best wishes to you as you start this journey!

I experienced no debilitating side effects from the Big 3 meds or nebulized amikacin, just occasional nausea probably from the rifampin which I treated with ginger ale and ginger chews. Since it's localized to the lungs, nebulized amikacin diluted with .9 % saline might be easier to tolerate than IV infusions, and there's no PICC line to worry about. Arikayce, which is amikacin optimized for inhalation, could be even better, though cost / insurance approval could be an issue since the usual standard is to start that medication after six months of Big 3 therapy, and if sputum results are still positive. Good luck.

Thank you. I have just been diagnosed and in that overwhelming state of not knowing all the details. I will be working with an Infectious disease Dr in a couple weeks to outline treatments and next steps. There is an infusion clinic near where I live and they say they can teach me to do it at home. I do have bronchiectasis and my MAC is moderate and I have a cavity.

I am so sorry to hear about how hard this has been for you.

Yes they say I can do it at home. I won’t know all the ins and outs of treatment for a couple weeks.