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15 hours ago · Tired and having a fever normal after a few weeks on Big 3 for MAC? in MAC & Bronchiectasis

@joanden I started with side effects within a week of adding ethambutol to the azithromycin. Some people are fortunate to have minimal side effects. Exhaustion is part of the equation. Even if you don’t want to or seemingly don’t have an ounce of energy left, try to give yourself a pep talk, and at least take a short walk even if it’s only around the house. Then, the next day do a few more steps and so on to build up your strength. Sending you a hug. irene5

15 hours ago · Tired and having a fever normal after a few weeks on Big 3 for MAC? in MAC & Bronchiectasis

Sue, I get fevers and flu like symptoms from both ethambutol and Rifampin but especially from Rifampin. I have had the ethambutol dose lessened by 300 mg. irene5

Wed, Mar 18 9:53am · I can stop MAC antibiotics in June! in MAC & Bronchiectasis

@joanden I started on this journey in 2016. I was diagnosed a bit earlier. In the beginning I was on all three meds and seven days a week. Since I had lost 18% of my body weight, I struggled a great deal with that treatment. It was switched to the three day, but I still struggled. For me and for many others Rifampin seems to be the culprit. Studies have shown that there is little difference in results if you eliminate one. My understanding, and I am not a doctor, is that if you can tolerate two and then add Arikayce there is a higher “cure” rate. MAC can always come back, but after reading what @rits posted today I am encouraged as well we all should be by her positive result – or I should say “negative” result really:). irene5

Wed, Mar 18 9:39am · I can stop MAC antibiotics in June! in MAC & Bronchiectasis

@rits That is wonderful news. I am on the same “cocktail” as you. It has had to be tweaked a few times, but apparently there is a light at the end of this very long tunnel. I couldn’t be more thrilled for you. Congratulations! Irene5

Sun, Mar 15 10:00am · Restarted MAC meds in MAC & Bronchiectasis

@prelle1 I think we would be more prone to having a difficult time if we contracted the virus. It is a scary time for all of us. That is wonderful that you found a doctor to help you. We live in Connecticut and have found UMASS Worcester has excellent pulmonologists and ID doctors that are helping my husband (sarcoidosis) and me (MAC). They also have a specialty pharmacy as some places are hard pressed to obtain some of the medications. That might be a closer option for you. So glad you are having improved health! That’s reassuring for many of us I am sure!

Thu, Mar 12 1:14pm · Need to order medical book on MAC TB treatment and side effects in MAC & Bronchiectasis

I don’t know of a book. I’m sure there are many articles out there however. What I do know is those meds are harsh, and side effects happen. It is important to do our due diligence and make informed decisions regarding our health. Most doctors who prescribe the meds encourage patient feedback on tolerance/side effects of the meds. Mine have had to be tweaked more than once.