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Two drugs theee days a week for MAC. Anyone have this experience?
My Drat NYULangone believes my on going lung deterioration is due to a MAC infection, although none has shown up in my sputum tests. I was treated for MAC with the big three 20 years ago and had terrible side effects.
The Sr has suggested that if a bronchoscope shows MAC she would treat me with 2 meds 3 days a week and assures me that this is better tolerated than the old 3 drug method.
Anyone have any experience with this treatment?
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I was on Azithromycin+ethambutol MWF and by the weekend had bad abdominal pains that lasted 48 hours so stopped them after 7 weeks.
Concerned about my lungs.
Hesitant to start Brinsupri for fear of side effects.
Good luck
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1 ReactionI was on the azithromycin and ethambutol my last 5 months after negative culture since I could not tolerate the rifabutin or levequin. I have been off meds since May 2023 and doing okay.
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4 ReactionsAfter 11 months and a bad reaction to rifampicin, we stopped all meds for 2 weeks, then reintroduced Azithromycin and then clofazimine this week only. I had terrible stomach issues, cramps, vomiting and diarrhoea yesterday, Third day on the 2. Will remain on 2 drugs only regime.
I hope yesterday’s reaction is not going to be the norm, I couldn’t do it for the rest of my treatment!
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2 ReactionsI found taking the meds in the evening, soon before bed, worked for me. I used zofran for a few weeks until my body adjusted.
Also, using naturally fermented foods like yogurt with live cultures, and fresh kimchi or sauerkraut will help counter the loss of good gut bacteria. If you cannot tolerate either, a high quality, fresh probiotic can help. I used the ones from our local natural foods coop. They were in the refrigerated case, and sold quickly. Some people here have had good luck with the Jarrow brand as well. This is one place where the cheapest are not the best.
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2 ReactionsI started Big 3 last Feb. Could not tolerate Rifampin so my Dr at USF took me off and I've been doing Azithromycin and Ethambutol 3x per week.
Cleared MAC after 4 months and if I'm still clear on next sputum culture I will stop meds in Feb.
I'm extremely grateful for my Dr and of course the good Lord. I'll be 78 in a few days and I'll continue nebbing 7% saline and praising God for His strength, peace and hope.
God bless all of you on this journey, it's not an easy one.
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