Starting BIG 3 tonight ….

It is a frightening transition to go from healthy to fighting MAC!
I, too, was concerned when I started the big three in late July three times a week. I was worried about diarrhea, since I’m already too skinny as it is. My clinic’s nurse suggested I take my meds before bed at least a couple of hours after my food. That way, the antibiotics can work while I sleep and the next day I can work on keeping my gut biome healthy by taking probiotics and florastor (a probiotic that survives the onslaught of antibiotics).
My primary care doctor referred me to an integrated medicine practitioner who advised me on how to keep my immune system strong. She basically told me to eat the way we all know we should eat: lots of fruits and vegetables and quality protein (chicken, fish, tofu, garbanzo beans). Avoid fried foods, alcohol, sugar and empty carbohydrates since they tend to create inflammation in the body. I did get an itchy rash from Ethambutol and stopped it after two weeks. I continued the other two antibiotics and I am now taking them every day.
So far, I’ve felt pretty good with no tummy trouble.
BTW, the pharmacy insert that came with Rifampin says to take it two hours after a meal and with a full cup of water. You might ask your doctor about that.
Good luck!!!🍀

Thank you so much for your kind words . It is nice to hear that it is possible to tolerate. Gives me hope. so far so good. will take every day.. so I am loading up with Kefir and oats in hope of keeping the gut healthy. lets see. Good luck on your journey 🙂

Hi there! On the daily same Big 3 doses as you, plus twice daily inhaled Amikacin. I wanted to let you know what my BE/MAC/MAI pharmacist from Mayo Clinic advised to get the most effective absorption of meds: NEVER take Rifampin with Azithromycin bc the Rifampin decreases Azithromycin absorption by over 50%!!! Macrolides are the #1 fighter against MAC, so you want to absorb the full dose. Also, INHALED Amikacin goes directly to the lungs, versus IV Amikacin, thereby decreasing chances of cruddy systemic side
effects.
I'm certainly not saying that your ID doc doesn't know what's best for you, but my Mayo ID doc and his pharmacist are adamant about making sure that all meds prescribed are most efficiently and maximally absorbed. It's why the pharmacist personally calls MAC patients to explain the schedule. I've updated my daily schedule if you're interested how I do it all without feeling like it's taking over my life. We are all different bodies with different physiological characteristics. Best wishes for testing negative sooner than later!

thank you for your answer. does that mean that you take the Rifampin at a different time of the day ? do you mind sharing your medicine schedule ? I was only told to do at night with dinner , however last night was 9.30 so I forced myself to eat something to take the pills. I am planning to do 8 ish? after supper? I have dinner ready for kids 6 pm ,, so too early ? How are you feeling ?

Interesting you are starting all 3 at the same time. When I started the big daily I just did the Azithromycin for the first week then added the Rifabutin week two and Erythromycin week three to help determine if any caused initial side effects. Are you also taking a probiotic in addition to the kefir? I did space mine out through the day and for me, I tolerated them better with food even if it was just toast or crackers. It does seem early to add in the IV after a month as it appears to be given if you don’t convert to negative after a longer period, 4-6 months. Hope you tolerate the meds well, sorry you are going through this journey but glad you found this group which is a great support and resource.

Long read, but here's what works for me. Except for periodic "tired" days, I have zero side effects.
4:30A-Sunrise yoga/Inhaled Amikacin/500 mg Azithromycin with just a sip of water.
530A-Black coffee followed by 8 miles daily run (aka Airway Clearance & Mental Health Care).
730A-Breakfast
8A-500P-Living my full life of daughter, wife, mom, grandma to 4 busy boys, and volunteer work.
5:00P-Inhaled Amikacin followed by dinner.
8:00P-Ethambutol and Rifampin with FULL glass of water.
Also, I've always been an upbeat, positive, glass half full kinda gal, so this "little bump in the road" hasn't stopped me. Just simply tweaked my already very busy and full life. On my "fatigue" days is when I get some crocheting, reading, or baking done plus take a nap. I realize I'm a very lucky 64 yo for having zero side effects from all these meds. Terri

I have been on Big 3 daily for over a year with few problems. I had some nausea the first few weeks but then it passed. A few months in, I became extremely itchy but that also passed. I have followed the directions that come with the meds: Rifampin should be taken 1 hr before or 2 hrs after a meal, the others can be taken with or without food. Probiotics should be 4 hrs before and after antibiotics. Here is what works for me
7AM after breakfast Azithromycin & Ethambutol
12N Probiotic
3PM Inhaled Arikayce
9PM Rifampin

Thank you so much for your reply..
I had a regular day - aside from orange pee and a little sleepy in am. Now home I am feeling a little nausesous and flu like .like a fever ish etc. all that is on the list of common symptoms .- docs office is closed . I will still take medicine as directed tonight with dinner .I was told by doctor to take at night in case side effects will be during sleep. So you just take the pills even feeling the side effects if mild I guess? I am usually so active s this is a new "reality" . will let my self rest until it settles? Did you slow down the few weeks and then get energy back.. thank you again for answering 🙂 very much appreciate . I live with my younger daughter alone ( other daughter in college) .

oh and I forgot - do you take Motrin etc for headaches etc.? I forgot to ask if I can take something of the side effects .. ha!

First off, most people have some minor side effects during the first couple weeks of starting the Big 3. I chose to ignore mine to avoid taking more medication. I never get headaches because I hypercirculate oxygen during my running; it's a well known fact that exercise is the best cure for headaches. Others on here suggest ginger chews for nausea. I've found most people really want to get through this without adding more meds, so they opt for a good probiotic. I also drink PLAIN Kefir on an empty stomach for best absorption-definitely an acquired taste.
If you can garner every ounce of patience and learn to deep breathe through the first two weeks, hopefully your body adjusts to your new normal. Make sure you're doing AC and PD as well, since that's imperative for getting out the overabundance of mucus.
Please know that we're all in this together and our goal is to be of assistance to this fun little group. Don't be afraid to ask questions, or for clarification on anything. A few of us are blessed to live in the great state of MN where we have the awesome UMN/Mayo Clinic docs whom we cherish! They work in cohesion with NJH, Johns Hopkins, etc. Knowledge is power, and you are your best advocate for your personal health. Terri