Big 3 all at same time?
I'm starting the "big 3" soon and am curious about 2 things. One is about taking all of the meds at the same time (say a couple hours after evening meal)--for me, that's one azithromycin, 2 rifampin, and 4 (400mg) ethambutol. Who has success with that schedule, is that what your doc recommends? I picked up the drugs today, and got no guidance about that from my doc and didn't know to ask the pharmacist. Second question: I read that for my weight (about 55 kg), and taking meds 3x/week, I should be starting with 1200 mg of ethambutol. But doc has prescribed 1600; seems like a lot, given the risk of optical neuritis. I'm not going to start taking anything until I've had base line blood work done (in 2 days) and have my questions answered. I think patient experience is really important and value any input from folks here. Thanks!
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I just started the big 3 on June 4th. Somewhere in my reading I read that Azithromycin is best an hour before or 2 hours after a meal and also read it can be with or without food. I take my meds at the end of the day so I can take my calcium, zinc, probiotics in the morning to give plenty of time between the meds. Calcium and zinc can interfere with effectiveness. So, I take azithromycin an hour before dinner, ethambutal with dinner and rifampin at bedtime. I had no issues until after dose 5 when I got an itchy scalp, neck and face rash. This was a Friday. On Monday, after talking with my ID's office, I took Benadryl 50 mg just before I took the azithromycin and everything was fine. Rash is a listed as a possible side effect of all the meds. I have taken Z Paks before, so don't think it was the azithromycin. The rash appeared a little over an hour after the ethambutal. The itching had calmed down by bedtime. So, I'm thinking it was the ethambutal. Good luck. I am careful about the food precautions as well. It has not been terrible. I believe the dietary cautions have helped
Congratulations 🙌
I do hope you can stay clear! All doctors think differently! I understood there are guidelines worldwide. 3 x pw no cavities, 7 days pw if cavities exist! Not so apparently. One doc said aggressive treatment 7 x pw required. Then I get a different doc she said guidelines 3 x pw. So I agreed to start meds 3 x.
I saw another doc as in the public system I could never see the same doctor, he said he would have had me on everyday meds. No wonder we are so confused!!!!!!
However at 4 months I had my very first negative sputum so for that reason I am left on 3 x pw. As it is working and thank goodness for that I could not cope with taking meds everyday. Doc also said those guidelines are in USA only! Conflicting advice 🥴
Thank you for sharing your story/protocol. Would you make mind sharing what probiotics you take? I am getting ready to start antibiotics and I am searching for a good probiotic to add to help with gut health during this treatment. Thank you in advance.
I'm in the USA and the guidelines I've read and been told by my doc are 3x/week. I think that before 2020 the recommendation was 5x/week. Now, from what I can tell, it's 5 times if you're immunocompromised or have more severe MAC (cavity vs. nodular). It is indeed confusing!
@brookbth I am taking California Gold Lactobif 30. I purchase them from iHerb.com and they are very affordable. They contain 5 Lactobacilli and 3 Bifidobactera strains which from what I've read are appropriate for the antibiotics.
Actually the protocol has been 3x per week unless you had cavities or M Abscessus, then it was 7 days a week. If you didn't convert to negative after 12 months they also increased meds to daily. More recently the protocols have changed so if you don't convert after 6 months many docs keep the oral meds at 3x per week and add inhaled Arikayce.
We are waiting for new protocols to be released sometime this year.
Most of these guidelines are now accepted internationally.
Things have changed a lot in the 7 years since I began to learn about Mac and Bronchiectasis.
Yes but I’m in Australia and the doc said we don’t follow USA guidelines. Obviously tho some do considering the one who put me on 3 x pw.
Frustrating
Thank you very much for sharing that information with me. This is all very new and very confusing so “real-life” experience is proving to be very important and if I am being honest much more helpful. Thank you again and good luck!
When I was diagnosed, I had no idea what MAC was and was not given much information from my doctors. I did a lot of internet research and kept finding more aspects. Like you, this site has really helped me. The real-life experience is very helpful, and offers different perspectives and options to consider. I wish you the best on this MAC journey!
Pw?