I was diagnosed with MAC in May 2015.

Posted by pamelasc @pamelasc1, Feb 25, 2016

Hello – I have just joined the group – I was diagnosed with MAC in May 2015. I began the treatment of the 3 antibiotics 3 times a week in October 2015. I plan to stay with the treatment for the 18 months, or longer if I have to. I am 66, thin, 5′ 7″ and also have bronchiestisis. My question is: when taking these meds, my sinuses act up off and on – lots of nasal drip and then it goes into my sinus as if I have a sinus infection. It lasts for a week or so, then goes away. It comes and goes. I think maybe it is the Rifampin, but not sure. Does anyone else have this problem? Many thanks, Pamela in the Boston area

@Paula_MAC2007

@pamelasc1 and @tessie — I noticed a similar thread in your posts. You are both thin or slim, middle aged women. When I was diagnosed, my pulmonologist told me that the latest manifestation of MAC/MAI is in thin, middle-aged women. Seems to me, what we have in common is changes in hormones. Doctors just don’t know the correlation. There is also some connection to low levels of Vitamin D.

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Jill are you still on the meds? Doing OK?

Just started and hope to hear success stories.

Hope you are getting better.

Kay

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@tessie

Did you tell your doc you’re taking medication at night? Mine told me take
medication in the morning. I take them with food, and with lunch. It’s the
best I can do as I just don’t feel well for 2 hours or more with the
dosage. I don’t take them all at once with food, but in between food on the
top.

I have fatigue effect sometimes.

​And, I like wine. I take a drink on OFF meds days. Pharmacist told me no
alcohol. I think within reason.​


*Gayle*

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Mayo Clinic told me to take them all at night, with dinner for 2 of them and the E one before bed.
Just started yesterday,madding one pill each day.

Hoping and praying I can tolerate them

Kay

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@tessie

Did you tell your doc you’re taking medication at night? Mine told me take
medication in the morning. I take them with food, and with lunch. It’s the
best I can do as I just don’t feel well for 2 hours or more with the
dosage. I don’t take them all at once with food, but in between food on the
top.

I have fatigue effect sometimes.

​And, I like wine. I take a drink on OFF meds days. Pharmacist told me no
alcohol. I think within reason.​


*Gayle*

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Hi Kay i was diagnose with mac at the beginning of july. So i have one month down. So far havent had a problem with the meds. Had a little diarrhea at first, that went away. Was told that i couldn’t wear my contacts cause meds would turn them orange. That did not happen. Did go n get my eyes checked cause meds could possibly mess with eyes… i was told i would be on meds for a year, hoping n trusting that God says something different…

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Sophie
Glad you are doing well. What time of day do you take your meds?

Thanks so much.

Kay

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Good morning i take my meds around 530 thru 700 p.m. and i eat so that seems to help.

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@sophie1019

Good morning i take my meds around 530 thru 700 p.m. and i eat so that seems to help.

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Sophie
Good. That’s my plan too. On third day. Kay

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I was so worried about the side effects, etc but now i am confident that i or We can beat this. This is just a little setback. We will make it thru. Hope you have a wonderful day.

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.. what a great attitude Sophie! Good for you!! So glad to have you on the Forum sending all this Positive Energy to all those on our shared journey! Sending you a hug! Katherine

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Thank you. Anyone that needs,a,word of encouragement, email me….Lord knows I needed a kind word when i first started out…

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@katemn

Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here .. I’ve learned SO much from our forum members .. good people! You will see that when I was diagnosed in 2007 .. was on 5 antibiotics for 30 months .. have been negative now since May 2014! See Dr. Timothy Aksamit, a specialist in MAC at Mayo Clinic at Rochester MN. I am now age 72 .. doing great .. exercising, traveling and living life!

I don’t know how you feel about this .. but I have had GREAT experience with acupuncture for sinus/nasal issues. I also have bronchiectasis .. big time but have been told the terrific coughing is in part due to the sinus/nasal issues. I googled acupuncture in our area .. found a practitioner who graduated as an MD Internist in China .. PLUS had been brought here to teach acupuncture. SO .. do your “due diligence” .. find a good practitioner. I found 4 visits really helped my issues .. was told it can take 5-6 depending on the severity.

It worked so well for me I have now sent my husband who has suffered a LOT of sinus issues for a long time .. he has only gone 2 times and says he can see the difference already .. and he is a bit of a sceptic! I reminded him that in some countries they use acupuncture for surgeries!

In terms of the Rifampin .. my only side affect was a LOT of sleep disturbance .. which went away when I stopped taking it. But every person’s body is different and will react differently. Hope this helps!

Stay strong .. stay positive .. stay happy!
Katherine/katemn

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Insomnia? I have no idea. Try adjust WHEN you take meds. I don’t take them all at once, rather after breakfast, then the ‘red urine’ pills on an empty stomach before lunch. Right after dinner is the last pill. I think diarrhea is minimal with this method – next to none at all with me. Thankfully my cough has subsided but I must continue.

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@katemn

Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here .. I’ve learned SO much from our forum members .. good people! You will see that when I was diagnosed in 2007 .. was on 5 antibiotics for 30 months .. have been negative now since May 2014! See Dr. Timothy Aksamit, a specialist in MAC at Mayo Clinic at Rochester MN. I am now age 72 .. doing great .. exercising, traveling and living life!

I don’t know how you feel about this .. but I have had GREAT experience with acupuncture for sinus/nasal issues. I also have bronchiectasis .. big time but have been told the terrific coughing is in part due to the sinus/nasal issues. I googled acupuncture in our area .. found a practitioner who graduated as an MD Internist in China .. PLUS had been brought here to teach acupuncture. SO .. do your “due diligence” .. find a good practitioner. I found 4 visits really helped my issues .. was told it can take 5-6 depending on the severity.

It worked so well for me I have now sent my husband who has suffered a LOT of sinus issues for a long time .. he has only gone 2 times and says he can see the difference already .. and he is a bit of a sceptic! I reminded him that in some countries they use acupuncture for surgeries!

In terms of the Rifampin .. my only side affect was a LOT of sleep disturbance .. which went away when I stopped taking it. But every person’s body is different and will react differently. Hope this helps!

Stay strong .. stay positive .. stay happy!
Katherine/katemn

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Jill
At Mayo they told me to take all three at night w dinner, except 2 hours after dinner for E drug. I am on day 4 and add Rifampin. I think if it causes sleep problems maybe change it tO AM w a meal. It seems to cause the most problems.

I hope changing around the times can help. I’m not excited to think of 18 months of this. Doing my best. Some nausea and lost some weight.

Maybe changing the times and taking Rifampin w food might help? I think part of my nausea is when I get upset. Sometimes getting busy w something takes it away.

Mayo Clinic Pharm also said if you can ride it out the side effects subside. Maybe just some time. Visualize those drugs eating up the nasty little bacteria.

It’s all very difficult. Hang in there and keep us posted if you find some secrets to tolerating the meds!

Best
Kay

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@katemn

Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here .. I’ve learned SO much from our forum members .. good people! You will see that when I was diagnosed in 2007 .. was on 5 antibiotics for 30 months .. have been negative now since May 2014! See Dr. Timothy Aksamit, a specialist in MAC at Mayo Clinic at Rochester MN. I am now age 72 .. doing great .. exercising, traveling and living life!

I don’t know how you feel about this .. but I have had GREAT experience with acupuncture for sinus/nasal issues. I also have bronchiectasis .. big time but have been told the terrific coughing is in part due to the sinus/nasal issues. I googled acupuncture in our area .. found a practitioner who graduated as an MD Internist in China .. PLUS had been brought here to teach acupuncture. SO .. do your “due diligence” .. find a good practitioner. I found 4 visits really helped my issues .. was told it can take 5-6 depending on the severity.

It worked so well for me I have now sent my husband who has suffered a LOT of sinus issues for a long time .. he has only gone 2 times and says he can see the difference already .. and he is a bit of a sceptic! I reminded him that in some countries they use acupuncture for surgeries!

In terms of the Rifampin .. my only side affect was a LOT of sleep disturbance .. which went away when I stopped taking it. But every person’s body is different and will react differently. Hope this helps!

Stay strong .. stay positive .. stay happy!
Katherine/katemn

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We need our lungs. The doc said meds wouldn’t shorten my life but I hesitate to agree with him. Definitely some damage is done. I lost weight too. He told me to take meds in the morning. His schedule made me feel ill. I’ll get them down best I can. Sometimes I think yogurt helps. Besides MAC may come back. Health Canada gave up trying to find the cause. Anyone near me coughs – I quickly turn away regardless they cover their mouth. Miserable disease.

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@katemn

Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here .. I’ve learned SO much from our forum members .. good people! You will see that when I was diagnosed in 2007 .. was on 5 antibiotics for 30 months .. have been negative now since May 2014! See Dr. Timothy Aksamit, a specialist in MAC at Mayo Clinic at Rochester MN. I am now age 72 .. doing great .. exercising, traveling and living life!

I don’t know how you feel about this .. but I have had GREAT experience with acupuncture for sinus/nasal issues. I also have bronchiectasis .. big time but have been told the terrific coughing is in part due to the sinus/nasal issues. I googled acupuncture in our area .. found a practitioner who graduated as an MD Internist in China .. PLUS had been brought here to teach acupuncture. SO .. do your “due diligence” .. find a good practitioner. I found 4 visits really helped my issues .. was told it can take 5-6 depending on the severity.

It worked so well for me I have now sent my husband who has suffered a LOT of sinus issues for a long time .. he has only gone 2 times and says he can see the difference already .. and he is a bit of a sceptic! I reminded him that in some countries they use acupuncture for surgeries!

In terms of the Rifampin .. my only side affect was a LOT of sleep disturbance .. which went away when I stopped taking it. But every person’s body is different and will react differently. Hope this helps!

Stay strong .. stay positive .. stay happy!
Katherine/katemn

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Well I dont worry about mt life being shortened, i worry about trying to live a healthy life and feeling positive. We are only here for a short while anyway, so why not make the best of it. My doc didnt tell me when to take meds, he just told me to take them, so i take then in the afternoon cause i take blood pressure meds in the morning. Keep your head up. I will pray for you and hope that you start to feel better.

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@katemn

Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here .. I’ve learned SO much from our forum members .. good people! You will see that when I was diagnosed in 2007 .. was on 5 antibiotics for 30 months .. have been negative now since May 2014! See Dr. Timothy Aksamit, a specialist in MAC at Mayo Clinic at Rochester MN. I am now age 72 .. doing great .. exercising, traveling and living life!

I don’t know how you feel about this .. but I have had GREAT experience with acupuncture for sinus/nasal issues. I also have bronchiectasis .. big time but have been told the terrific coughing is in part due to the sinus/nasal issues. I googled acupuncture in our area .. found a practitioner who graduated as an MD Internist in China .. PLUS had been brought here to teach acupuncture. SO .. do your “due diligence” .. find a good practitioner. I found 4 visits really helped my issues .. was told it can take 5-6 depending on the severity.

It worked so well for me I have now sent my husband who has suffered a LOT of sinus issues for a long time .. he has only gone 2 times and says he can see the difference already .. and he is a bit of a sceptic! I reminded him that in some countries they use acupuncture for surgeries!

In terms of the Rifampin .. my only side affect was a LOT of sleep disturbance .. which went away when I stopped taking it. But every person’s body is different and will react differently. Hope this helps!

Stay strong .. stay positive .. stay happy!
Katherine/katemn

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I’ve been on meds for six months. I take rifampin in tues thurs and Saturday morning before breakfast and the others on non we’d Friday close to bed time after meal or snack so side effects if any are during the night doesn’t ruin my day

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@katemn

Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here .. I’ve learned SO much from our forum members .. good people! You will see that when I was diagnosed in 2007 .. was on 5 antibiotics for 30 months .. have been negative now since May 2014! See Dr. Timothy Aksamit, a specialist in MAC at Mayo Clinic at Rochester MN. I am now age 72 .. doing great .. exercising, traveling and living life!

I don’t know how you feel about this .. but I have had GREAT experience with acupuncture for sinus/nasal issues. I also have bronchiectasis .. big time but have been told the terrific coughing is in part due to the sinus/nasal issues. I googled acupuncture in our area .. found a practitioner who graduated as an MD Internist in China .. PLUS had been brought here to teach acupuncture. SO .. do your “due diligence” .. find a good practitioner. I found 4 visits really helped my issues .. was told it can take 5-6 depending on the severity.

It worked so well for me I have now sent my husband who has suffered a LOT of sinus issues for a long time .. he has only gone 2 times and says he can see the difference already .. and he is a bit of a sceptic! I reminded him that in some countries they use acupuncture for surgeries!

In terms of the Rifampin .. my only side affect was a LOT of sleep disturbance .. which went away when I stopped taking it. But every person’s body is different and will react differently. Hope this helps!

Stay strong .. stay positive .. stay happy!
Katherine/katemn

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I take rifampin in Tuesday Thursday and Saturday mornings before breakfast.
I take the others Ted end of day Monday Wednesday and Friday’s. Have few side effects at bedtime which have subsided. I have great days everyday. Been on meds six months
Having CT scan today

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