I finally found one that works for me. I was having terrible diarrhea and nausea in the morning when I was taking rifampin at night and azythromycin and ethambutol in the morning. Now I take rifampin and the other two at 6:30 am with a little water and a cracker. Then I don’t eat until noon. I feel much better doing that
@suzylulu I take them on an empty stomach Monday morning about 12:30 am then Wed morning about 10 am then Friday at about 5pm,. I do this to try to make the distance from Friday to Monday a little less. I think rifampin is suppose to be on an empty Stomach. the others can be with food. I had tried taking Rifampin first then waiting 2 hours then the others with a little food but I found it did not bother me too much to take them all together.
@suzylulu I take them on an empty stomach Monday morning about 12:30 am then Wed morning about 10 am then Friday at about 5pm,. I do this to try to make the distance from Friday to Monday a little less. I think rifampin is suppose to be on an empty Stomach. the others can be with food. I had tried taking Rifampin first then waiting 2 hours then the others with a little food but I found it did not bother me too much to take them all together.
I was initially advised to take the meds at night with yogurt, and that worked for me, but after reading & watching the NJH video (sorry I don't have the link...) I thought I would try the morning/evening empty stomach routine. Well, that was awful! Instead of just feeling lousy the morning after, which I thought was the Rifampin, I was nauseated all day from the other two, then felt just as bad the next day from the Rifampin. That meant I would feel sick about 6 days a week instead of 3 1/2 to 3/4 days...no way to live my life. So, since my symptoms and energy had improved a great deal using the evening routine, I decided that is what works for me. The only change was from taking with yogurt to just a little bit of cracker to avoid coating my stomach completely. I figure if the meds are a little less effective, but I am willing and able to continue the regime for the full 12-15 months, that is better than quitting or skipping doses because I feel terrible. Just my 2 cents worth. My pulmonologist, who has been treating all the MAC patients in a large clinic system for over 20 years, agrees. And I am a big believer in a good probiotic - one that is labeled to have a specially coated capsule so it doesn't dissolve until it reaches the intestine. So far, after 10 months and many courses of antibiotics, I have managed to avoid all but a few days of the diarrhea that used to plague me every time I was on one.
I finally found one that works for me. I was having terrible diarrhea and nausea in the morning when I was taking rifampin at night and azythromycin and ethambutol in the morning. Now I take rifampin and the other two at 6:30 am with a little water and a cracker. Then I don’t eat until noon. I feel much better doing that
@papillion I wish that I had started them sooner. My Pulmonologist saw slow changes but told me to hold off. Then I had more changes and he started me. Wish he would have started me before more changes were seen on my scan. Perhaps I would have had less damage if I took them sooner. We also can still try to see if the Nitric Oxide studies get underway
Symptoms or not? What are your lungs showing? I was having symptoms - cough, green sputum, exhaustion, weight loss... My lung scan showed significant pockets of what the doc characterized as infection as well as the characteristics of bronchiectasis - his recommendation was to treat and I am glad I followed it - after 3 months cough is vastly reduced, sputum is less & clear, energy is improving, side effects are tolerable most of the time.
I've been on the big 3 for 10 months now. I feel worse than I did within the first few months of taking these. I'm not sure if I'm short of breath or just anxious, I'm exhausted constantly and feel week through my entire body. I do get frequent loose bowels that seem to not help me retain my nutrients. I just don't know what to do from here. I could use some suggestions.
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I finally found one that works for me. I was having terrible diarrhea and nausea in the morning when I was taking rifampin at night and azythromycin and ethambutol in the morning. Now I take rifampin and the other two at 6:30 am with a little water and a cracker. Then I don’t eat until noon. I feel much better doing that
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1 Reaction@helem thats great that you found a way that works, go you!
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1 Reaction@suzylulu I take them on an empty stomach Monday morning about 12:30 am then Wed morning about 10 am then Friday at about 5pm,. I do this to try to make the distance from Friday to Monday a little less. I think rifampin is suppose to be on an empty Stomach. the others can be with food. I had tried taking Rifampin first then waiting 2 hours then the others with a little food but I found it did not bother me too much to take them all together.
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1 ReactionThanks for answers
I was initially advised to take the meds at night with yogurt, and that worked for me, but after reading & watching the NJH video (sorry I don't have the link...) I thought I would try the morning/evening empty stomach routine. Well, that was awful! Instead of just feeling lousy the morning after, which I thought was the Rifampin, I was nauseated all day from the other two, then felt just as bad the next day from the Rifampin. That meant I would feel sick about 6 days a week instead of 3 1/2 to 3/4 days...no way to live my life. So, since my symptoms and energy had improved a great deal using the evening routine, I decided that is what works for me. The only change was from taking with yogurt to just a little bit of cracker to avoid coating my stomach completely. I figure if the meds are a little less effective, but I am willing and able to continue the regime for the full 12-15 months, that is better than quitting or skipping doses because I feel terrible. Just my 2 cents worth. My pulmonologist, who has been treating all the MAC patients in a large clinic system for over 20 years, agrees. And I am a big believer in a good probiotic - one that is labeled to have a specially coated capsule so it doesn't dissolve until it reaches the intestine. So far, after 10 months and many courses of antibiotics, I have managed to avoid all but a few days of the diarrhea that used to plague me every time I was on one.
Hi. Any heart palpitations.
I still don’t know what to do. Go on antibiotic or not
@papillion I wish that I had started them sooner. My Pulmonologist saw slow changes but told me to hold off. Then I had more changes and he started me. Wish he would have started me before more changes were seen on my scan. Perhaps I would have had less damage if I took them sooner. We also can still try to see if the Nitric Oxide studies get underway
Symptoms or not? What are your lungs showing? I was having symptoms - cough, green sputum, exhaustion, weight loss... My lung scan showed significant pockets of what the doc characterized as infection as well as the characteristics of bronchiectasis - his recommendation was to treat and I am glad I followed it - after 3 months cough is vastly reduced, sputum is less & clear, energy is improving, side effects are tolerable most of the time.
I've been on the big 3 for 10 months now. I feel worse than I did within the first few months of taking these. I'm not sure if I'm short of breath or just anxious, I'm exhausted constantly and feel week through my entire body. I do get frequent loose bowels that seem to not help me retain my nutrients. I just don't know what to do from here. I could use some suggestions.