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Hi Joann, I've been on the big 3 plus some others. I was lucky and did not have bad side effects. Well, I should say that the Rifampin did not agree with me so they took me off that and put me on Clofazimine. Later I tried Rifabutin which I tolerated well so that was added. The meds did make me tired early in the day and I changed my taste buds so that foods didn't taste the same and my appetite was less but for me that wasn't a bad thing. For once in my life I didn't have to watch everything I ate or gain weight. 🙂 I was on the meds for 15 months and have been off since April of this year. They did eradicate the NTM so treatment was successful.
They should start each med separately adding the new one each week. That way if you don't tolerate one they'll know which one it is. You'll get your blood tested and eyes checked while on the meds. The doctors should explain all this to you. Ethambutol can affect the eyes and all the meds can affect liver and kidneys. Also if you end up on Amikacin you'll want to get your ears checked regularly.
Best to you and let us know how it goes.
Replies to "Hi Joann, I've been on the big 3 plus some others. I was lucky and did..."
@rosecurran Hi Rose. I took all mine together after lunch but I didn't have a problem with getting sick. I'd get a few stomach cramps sometimes and they made me sleepy but that's about it. Sorry I couldn't be of more help. I'm sure others will chime in. I'm glad they caught the infection before more damage was done to her lungs. I also have mild bronchiectasis but also some cavitary lesions (which are holes in the lungs). I don't feel any effects from them though, now that the infection is cleared up. Like bronchiectasis, the holes never go away I guess, but as long as they stay the same and I feel fine, it's nothing to worry about.
I do think that she is supposed to take all of each med at once. Like if she takes 4 ethambutol tablets she should take them all at once.
And good for her for staying active! It is very important to keep the lungs healthy.
@jenblalock , I think the hardest thing for all of us is getting used to our 'new normal'.
I am not sure which formulations she is taking but I am on Rifampin which is supposed to be on an empty stomach ( one hour before or 2 hours after a meal) I take it one hour before my other meds( sometimes a little longer) then a little snack with the others together. If it is after a meal, I wait more than 2 hours because I still feel full and therefore think my stomach must not be empty.
Truth. I tell people I am now back to normal although I am not really sure what that is since I wasn't even normal before diagnosis apparently.
Hi @jkiemen when I was on meds my biggest concern was compliancy,. So whatever it took for me to take my meds daily is what I did, even if it wasn't exact protocol.
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@rosecurran I took the three meds for a year and I spread them out throughout the day. I took one around 8 or 9 am and then I took the second around 12 or 1 and then took the third around 6 pm. That was about a year ago so I don't remember much else. I just know I didn't take them all at once or close together and I made it through the twelve months. Nan