about to begin treatment for MAC

Posted by onana @onana, Aug 18, 2018

Greetings. I'm new to the group and about to begin treatment for MAC. I'd appreciate hearing from anyone who has experienced the three drug treatment and especially hearing best ways to tolerate the side effects.

Liked by hydrang3a

@jkiemen

@suzyqueue I take my meds all together on an empty stomach. I find I do not get too much nausea with them. Since they are 3 days a week, I try to space it out so there is not such a big gap between the 3rd dose for the week and the 1st dose for the next week. I take my them on Monday morning at like midnight or shortly after. Then on Wed I take about 11 am then on Friday I take in the late afternoon. Of course I have to make sure my stomach is empty so I adjust meals or snacks to make sure I haven't eaten within 4 hours of any of the doses. It has been working out OK so far.

Jump to this post

Thank you so much for the information. I'm prescribed to take these every day. I've been spacing them out every couple hours but it's such a hassle. I've been curious about taking them all at once. I may try it. Then again, my Infectious Disease Dr is doing another "succeptibility" test on a sputum sample to see if all 3 meds are what I still should be on. I didn't have much improvement in my last CT scan so something may need to be changed. Thanks again.

REPLY

@suzyqueue It does take them a while to work. It is good he is doing susceptibility testing. They have approved the inhaled Amikcacin

REPLY

@suzyqueue We need to all keep an eye on Savara Pharmaceuticals and Molgradex Clinical trial

REPLY
@jkiemen

@suzyqueue It does take them a while to work. It is good he is doing susceptibility testing. They have approved the inhaled Amikcacin

Jump to this post

Yes!!!! My doctor did tell me that the other day as well as me getting a communication from the National Jewish Hospital in Denver about it. My doctor said that I would most likely be a candidate should my progress continue to be weak. It sounds promising.

REPLY

I am new to the website. I live in Massachusetts and am being treated by my doctor at Mass General. I'm beginning the "big three," but am so sick from the rifampin (extreme nausea which, alas, is quite constant), so fear I won't make it. Reading this thread has helped, but I have to do better than this! This is Day #5 for me. I would appreciate any ideas about managing the nausea.

Liked by Jamie Olson

REPLY

@pking Load up on probiotics to ward off nausea. I take ultra flora 50 billion one capsule in the morning and an align immune defense capsule at night. Hang in there. So tough getting started. I promise it gets easier.

Liked by Jamie Olson

REPLY
@pking

I am new to the website. I live in Massachusetts and am being treated by my doctor at Mass General. I'm beginning the "big three," but am so sick from the rifampin (extreme nausea which, alas, is quite constant), so fear I won't make it. Reading this thread has helped, but I have to do better than this! This is Day #5 for me. I would appreciate any ideas about managing the nausea.

Jump to this post

@pking ..I used acupuncture and ginger.My MAC was successfully treated with the big three and I've made good progress since. Others have changed the timing of the drugs. Three times aw week is easier than every day and works as well. Good luck finding what works for you.

Liked by Jamie Olson

REPLY
@pking

I am new to the website. I live in Massachusetts and am being treated by my doctor at Mass General. I'm beginning the "big three," but am so sick from the rifampin (extreme nausea which, alas, is quite constant), so fear I won't make it. Reading this thread has helped, but I have to do better than this! This is Day #5 for me. I would appreciate any ideas about managing the nausea.

Jump to this post

@pking, Hi there. Many patients on rifampin have found that taking it on an empty stomach helped a great deal. Can take either first thing in the morning, then wait an hour to eat food, or take at night before bed. You may have to play with the schedule a bit before figuring out what suites you. @heathert Heather says eating a cracker with the meds helps her.

REPLY

Hang in there! After 2 months my symptoms began to lessen. Hints: Ginger – ginger tea (the real stuff – I like Traditional Medicinals, widely available, even at WalMart – my friend puts it over ice and sips it all day. I drink 2-3 cups/day), Gin-Gin hard candies, I often take my meds with a gluten-free ginger snap cookie because I can't eat saltines. On really bad days, anti-nausea meds – ask your doc for one. You can also try flat real Coca Cola and nibbling on apple slices to ease nausea – find what works for you. Finally, I learned I can only take at bedtime, at least 2-3 hours after a light, bland meal. Eating a lot of soup on med days.

REPLY
Please login or register to post a reply.