I started Rifampin, Ethambutol, and Azithromycin 10 weeks ago, taking 3 days a week. So far have not experienced much in the way of side effects. I get a little bit of a stomach ache for short period of time on some days, and have had minor diarrhea a few times. But that has been it. Have not seen the more concerning side effects show up. I am expecting to do some blood tests in next month to check vital organs etc. I am definitely not coughing as much as I had, nor any episodes of hemoptysis.

As stated on warning label of Ethambutol, I have not had any alcohol, not sure if ok to take on "non-pill" days or not! Will be checking with Dr. to find out when we meet again.

Its still early in this long term treatment, but I am encouraged so far about my quality of life that I had such a reluctance to begin in first place.

Di,

Hello! So glad to read that you are tolerating the big”3” up to this point. The fact that you are coughing less, getting relief is huge.

Re: alcohol- the drugs will still be in your system even on your “ off med” days; hence , patients are advised not to consume alcohol beverages.

I love vino and beer occasionally; I endulged in Frie( alcohol free) vino and O’ Doules beer during that time. It was not as enjoyable, but I was able to get through this challenging time and get to the other side of feeling so much better.

I wish you the best at this time.

I was treated with the same cocktail for my NTM and tolerated all three very well. I loaded up on probiotics, timing the intake at opposite times of the day and had no side effects at all. I always do a lot of research on everything I take before it enters my mouth no matter who prescribes what so I am well acquainted with all possible side effects and what to expect.

As this was some years ago, my memory says I took them daily and could expect to take these for 18 to 24 months. I was out of the country when I ran out of my supply after about 11 months of treatment and as I was feeling very, very good, did not restart after returning home. So far.....so good.....knock on wood.

Do your research and be sure to add billions of probiotics to your system to reintroduce/keep all the good bacteria the antibiotics kill. They are vital to a healthy gut!

Quizzie,

Great name!:). Yes, probiotics are so important while taking the big 3 cocktail. So glad to read that you are doing well.

I've been on the three for 4 years. Never had a stomach problem and I'm a 125 pound 58 year old female.

Barbfit,

Four years is a long time. What is the treatment plan? When will you have a drug holiday

Barbfit

I also go to UNC at Chapel Hill to see Dr. Noone. He has been wonderful. So refreshing to have a doctor you can talk to.

I have Bronchiectasis and MAC. Diagnosed first with Bronchiectasis in 2016, MAC 2018. I am currently on the "big 3" treatment. Arithomizine, Rifampin, and Ethambutol every M, W, F. I am in my 8th week of treatment. I wanted to ask you if you still experienced fatique while on antibotic treatment? If so, did it subside any during treatment? Did you ever have aches or pain in your chest or back area?

My last ct scan in August showed a pocket of infection in my rt lung. This was before treatment started in October.

I was hoping that these symptoms would subside now that I am on a three antibiotic plan.

Thank you so much for your reply.

You are so right. One day I feel pretty good then the next day I feel breathless and tired. 9 weeks in now with the big three! So hoping that I will begin to feel better soon. This disease has certainly changed my life. Some times I feel so defeated. Just keep telling myself that it could be a lot worse.

I go back to Dr. Noone in January. Little concerned because I will need to give a sputum sample and most of my Bronchiectasis and MAC have been dry. At present I have no cough and no mucus. I do nebulize ( 7% ) but do not bring anything up.

Thank you again. So nice to talk with someone who understands.

I tolerated for 18 months but towards the end I had stomach upset and difficulty taking them. But the real problem because of its long-term effects is the hearing loss I suffer as a consequence which has made it difficult to be socially active as a hearing aid is not affordable.

I took the Big 3 for about 2.5 years starting in 2010. I was off meds until December 2018. Two weeks into the Big 3, I started having flu like symptoms on medications days (MWF). We discovered that it was caused by Rifampin. I am allergic to Cephalosporins and Levoquin. I also started having ear ringing from the Azithromycin. My hearing test showed very slight damage to the high pitched hair cells, which explains the ringing. I will be starting Arikayce in the next few days. I understand that has a side effect of ototoxicity as well.

Hello! I personally do not know anyone who has hearing issues due to arikayce . Below is a list of side effects https://www.rxlist.com/arikayce-side-effects-drug-center.htm

I hope that members who have used arikayce respond. All the very best!

Please keep us posted

I was on Arikayce for two months but taken off by my doctor because of side effects. No known hearing issues but only on for a short time. Terrible fatigue, breathing problems plus slightly irregular heatbeat and ct scan showed some alergic reaction to Arikayce. I cannot take Ethambutol but OK with Rifamin and Azythromycin. Doctor looking for third drug. I have an appointment with him tomorrow.