Hi,
I was diagnosed with Crohn’s at about age 51. When it flared again in 2017, I was going to be treated with Remicade. A routine lung X-ray found the nodules. That led to the bronchoscopy and the diagnosis of MAI. It has been difficult because the MAI had to be treated before I could get my Remicade. I was hospitalized five days at Mayo for the Crohn’s and yet I couldn’t get the Remicade because of this stupid MAI. I just finally got my first Remicade treatment January 4 because I had to complete 30 days of MAI treatment first. I had absolutely zero lung symptoms. I still don’t, and yet I’ve got to take the medicine for 18 months. To top it off, my dosage of the three drugs is about four times stronger than anyone I’ve ever read about. Plus, y’all keep saying you take the three drugs only three times a week? Not me. I have to take all the drugs every single day.

Hello pink tower, I am Carla I also take the big 3 medications every day. I take Clarithromycin 500 mg 2times a day I also take Rifampin 300 mg twice a day. I was just taken off the Ethambutol due to having vision problem with it plus having extreme breathing problems nearly passing out at Tim’s. I have been on these for 8 full months and off the last one this past month.
I also have RLS (restless leg syndrome) and also fibromyalgia. I have been on medication for RLS for at least 20 years now and on pain medications for the fibromyalgia for at least14 years now.
Have anyone else had problems with the 3 antibiotics to treat MAC and if so what where your side effects. I still have swollen lips but I guess it is not bad enough to take me off the other 2 antibiotics? I also use a combivent inhailer for when I need to clear my congestion or when I get real short of breat due to the COPD and the broncitious

I have been on the big 3. They made me deathly ill. I was off them for 9 months and restarting them now but only 3 days a week. I just started Tuesday so don’t know what the side effects on 3 days versus 7 days will be.

@suzylulu, Hello Suzy. I atteneded a mac conference last spring in D.C. The leaders in this field seem to think that three days a week on these antibiotics is just as effective and lessons the exposure of these drugs to your other organs.

Thanks, Teri, for the information. Hopefully it does work without the terrible side effects.

What doses are you taking?

I take Azithromycin 500mg Ethambutol 1200mg and Rifampin 600mg 3 times a week. I had to stop Rifabutin because of severe muscle and joint aches and that was changed to the Rifampin. I hit my 2 month mark on the 30th

I'm so glad u posted this info about the big 3....this is the first time I have heard this....sorry for butting in, but I follow your info....wonder how many other people didn't know this...just saying✌️