I will be starting my treatment for MAC in just a couple of days and I wanted to get your experiences on how your treatment has gone or is going. What meds were you prescribed? (I will be taking Zithromax 600 mg Mon, Wed, Fri; Rifampin 600 mg daily; Ethambutal 1200 mg daily.) how well have you tolerated them? What were your side effects (liver, eyes, stomach, etc...)? How long has your treatment been? How long until you started feeling better and how long until you no longer cultured MAC any more? Did PFTs go up? Any suggestions for me regrading diet or anything else that will help in tolerating the treatment? What else do you culture (i culture staph and Haemophilus I. as well)? thanks for your input.
Starting treatment for MAC: few questions
- Thread starter 4hats
- Start date
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Gracie4
Guest
While I've never had or experienced MAC, wasn't your CF center able to address all of these questions for you? My own experience has been they the CF centers aren't the best at addressing questions such as this (thank goodness my mother is a pharmacist (!)), but they definitely should be!
sweetninis
New member
My daughter has loss of appetite due to azithomycine 200mg/5ml which she has been taking since january on evey alternate day
While on those same meds for the treatment of my MAC....all bodily fluids were rust colored (tears, sweat, urine)...had extreme loss of apetite and lost a lot of weight....had lightheadedness and nausea occasionly....took the meds for 7 months until I felt the cure was worse than the illness....luckily it was for long enough for the meds to do their magic on the MAC!! Originally was supposed to be on the meds for 12 to 18 months. Would I ever take them again? Absolutely not.
My daughter was on Ethambutol and Myambutol for MAC. No ill side effects to speak of. She started in late December '09, in April '10 she was clean but because she was on immunosuppressants and relisted for her second tx, her new tx clinic wanted to keep her on them until her tx. She was required to have three consecutive negatives to be considered clean of MAC. She was continuously tested afterwards to be sure it was indeed gone and it was. Zithro had been part of her CF treatment and resumed but she'd been on it before with no ill effects.
I had a bad experience like Greatbay. I had nausea, joint pain, depression and a huge list of more side effects from the meds. I had to stop taking them because the treatment was worse than having the disease. I was only able to stand the meds for little over 6 months. I agree again with Greatbay... I would never touch those meds again. I lost a good chunk of my hearing due to the Zithro and still have trouble with my eyes from the Ethambutol. Get your eyes checked and hearing checked periodically.
Please remember though everyone responds to the treatment differently.
Get the necessary drug level tests.
Please remember though everyone responds to the treatment differently.
Get the necessary drug level tests.
I was diagnosed not with MAC but a different NTM, m.absessus. My treatment began about 2 months ago. It's IV cefoxitin 2g every 4 hrs, oral biaxin 500mg 2x/day, and inhaled amikacin 2mL once a day. And yes for 6 to 12 months. But Infectious Disease just told me it could be as long as 18 months. I don't think my CF doc will do that for fear of antibiotic resistance though. ID told me that once they get all clean samples (from your 3 within 10 days) then the treatment is 6 to 12 months.
We'lol see though, hope all is well for you.
Katie
We'lol see though, hope all is well for you.
Katie
BreeAlysia
New member
I was treated for MAC for a very long time. I did one stretch of 18 months, stopped for a few months and then I think I did another year. I am pretty sure my meds and the dosage was the same as what you've listed. My Ethambutal might have been lower. I tolerated the meds fairly well, but I usually tolerate them well. I took mine at night before bed so that if they bothered me, it would be at night and not at work. My liver and eyes were monitored and were fine, but do get your eyes checked (my doctor advised every six months) and make sure they do all the color testing. My eye doctor was very concerned when he read about the medicine (he hadn't ever had a patient on it before). My liver remained normal for the entire time I was on it. I stopped culturing it the first time they stopped my meds and then it came back. Then a few months ago when I stopped again, they found no sign of it. As for my PFTs, they never came up, but I also got pseudomonas in June and that lowered my PFTs, so I can't say for sure. I do know that when they started treating my MAC, I felt a whole lot better almost right away. I hope this helps. Sorry for the book.
I was treated for MAC for a very long time. I did one stretch of 18 months, stopped for a few months and then I think I did another year. I am pretty sure my meds and the dosage was the same as what you've listed. My Ethambutal might have been lower. I tolerated the meds fairly well, but I usually tolerate them well. I took mine at night before bed so that if they bothered me, it would be at night and not at work. My liver and eyes were monitored and were fine, but do get your eyes checked (my doctor advised every six months) and make sure they do all the color testing. My eye doctor was very concerned when he read about the medicine (he hadn't ever had a patient on it before). My liver remained normal for the entire time I was on it. I stopped culturing it the first time they stopped my meds and then it came back. Then a few months ago when I stopped again, they found no sign of it. As for my PFTs, they never came up, but I also got pseudomonas in June and that lowered my PFTs, so I can't say for sure. I do know that when they started treating my MAC, I felt a whole lot better almost right away. I hope this helps. Sorry for the book.
As soon as I started my treatments, the cultures turned up negative. However, 10 months into it I got back positive MAC cultures. I stopped treatment 2 months later, so I did a total of 12 months. I continue to culture MAC. Currently, I am not treating it, trying to see how my body responds. I tolerated the treatment. My eyes and liver were ok. My PFTs did go up by 12 points a few months into the treatment. My PFTs have come down about 6 points since I stopped treatments in June.