Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC

Hi Barbara,
The study of two versus three antibiotics is just winding down and results are not yet available. However, that said, I think many doctors have decided on their own to do away with rifampin. And I see that some are being creative with a third antibiotic, whether oral or inhaled.

I hope this is helpful and all the best to you,
Linda

Barbara, only Azithromycin or Clarithromycin and Ethambutol are necessary. Rifampin is no longer considered necessary according to my ID doctor (Dr. Wessolossky) at UMASS. I always thought anything that makes your pee red can’t be good. I know it was the pill dye, but gee whiz! In order to be on Arikayce it is my understanding that a patient has had to be on the other two for at least six months and had no improvement or was unable to tolerate them. I am the latter as I tried for five years - talk about perseverance!! And then came Arikayce as a clinical trial for me, and it cured me of MAC and thankfully with few observable side effects. I say observable because it did inflame my lungs which led to a really big ordeal for me after a robotic surgery, but I have heard of nobody else who had that issue! I lost over 18% of my body weight during these years and am holding at 73 pounds. My appetite is good, and I drink lots of Ensure, but have never gained the weight back. I was always 95 -100 pounds and am 5 feet tall. (used to be taller but have shrunk like the witch in the Wizard of OZ- “I’m shrinking!”). I have had other lung infections since MAC including Aspergillosis and RSV with bronchiolitis. I am 75. God is good! Like everything else in life as trite as it may sound - It’s all in the attitude! ( Irene5)

Sounds like you found yourself an informed ID doctor. Does that mean you are in the lovely state of Massachusetts? Beautiful up that way of the country. I miss New Jersey (born there raised there, left at 29) from the stand point of variety and the stately trees of the upper east coast states.
Yes that is the problem with so much.....some so called bad things have to be used with the good things, or so they feel, by the pharmaceutical and food producers. Red dye etc. etc.
Oh my Irene, five years. Yes, one of my favorite words, perseverence.....you know it too well.
The Tyler doctor was going to try to get me immediately into the Arikayce study but in her request to see me every three months, considering all I have to do to see her at a six hour drive etc., I turned her suggetion down. I will give the two a try and go from there and cross my fingers no problems and good results. I had my hearing baseline (a surprise, moderate hearing loss for me at 82) and will have eye baseline on the 11th and THEN....begin the med's.
Shrink we do, I haven't lost too much, 1/2 inch at this point in time.
I put on a pound or two then in drops then it goes up. When others tell me they wish they could give me more of what they have I explain it is just as hard to put the weight on as it is to lose weight.
Truly, it does disturb me the cycle that can and does happen for us BE patients.
Infection/MAC/Clearing/Another Infection/Antibiotics/Clearing/ etc. etc. I will stay positive and say to myself....."you can be different, you can hold it at bay." That's called, as you know, The Art of Positive Thinking. Attitude, Attitude. Hope it works....for me!
Barbara

You are so right !! People say that to me too! Putting on weight for many of us with MAC and BE is difficult Barbara because our bodies are fighting these diseases and quickly using up whatever calories we take in to fight disease! At your age with some hearing loss I would say you are doing ok. I just bought my husband OTC hearing aids and they are way better than the $3500 ones he lost!! We had gotten those expensive ones before I was told “ there’s an app for that”, and I could have had it on my phone and would have found those expensive ones!! Ugh! I have the app now! We live in Dayville, Connecticut in the quiet eastern corner of the state. UMASS is only 40 minutes away . My ID doctor and pulmonologist are there. My husband has sarcoid so he has a pulmonologist there as well. I did go to UMASS, Amherst for college in the 60’s and my brother went to Williams and lives in Leverett so I am familiar with that beautiful and safe state. One of our ten kiddos lives in Webster which is only 18 minutes away so that is a wonderful thing . I hope you do well on the meds. Two sounds like a plan. Leaving Rifampin out is now becoming the norm as apparently it isn’t needed my ID doctor and others have said. If the meds don’t work for you I hope you can get Arikayce as it is excellent for curing MAC. BE has no cure yet so we all have to be careful and do what we can to not get other bacteria and viruses. Last year at this time I was in the hospital with RSV!! That was a tough fight!! My mom always said, “It’s all in the attitude “. I try to be positive always and keep putting one foot in front of the other and trusting the good God with the big picture! Best, Irene

Oh my sarcoidosis. You both have got to be "putting one food in front of the other and trusting the good God."
Wishing you both a funny incident etc. that brings on a good hardy laugh this Sunday. We all need that!
Barbara