1. < MAC & Bronchiectasis

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

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Kay Strand | @kaystrand | Jul 31, 2016
In reply to @Paula_MAC2007 "@pamelasc1 and @tessie -- I noticed a similar thread in your posts. You are both thin..." + (show)
@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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Kay Strand | @kaystrand | Jul 31, 2016
In reply to @tessie "Did you tell your doc you're taking medication at night? Mine told me take medication in..." + (show)
@tessie

Did you tell your doc you're taking medication at night? Mine told me take<br />
medication in the morning. I take them with food, and with lunch. It's the<br />
best I can do as I just don't feel well for 2 hours or more with the<br />
dosage. I don't take them all at once with food, but in between food on the<br />
top.<br />
<br />
I have fatigue effect sometimes.<br />
<br />
​And, I like wine. I take a drink on OFF meds days. Pharmacist told me no<br />
alcohol. I think within reason.​<br />
<br />
-- <br />
*Gayle*<br />

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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

REPLY
Sophie | @sophie1019 | Jul 31, 2016
In reply to @tessie "Did you tell your doc you're taking medication at night? Mine told me take medication in..." + (show)
@tessie

Did you tell your doc you're taking medication at night? Mine told me take<br />
medication in the morning. I take them with food, and with lunch. It's the<br />
best I can do as I just don't feel well for 2 hours or more with the<br />
dosage. I don't take them all at once with food, but in between food on the<br />
top.<br />
<br />
I have fatigue effect sometimes.<br />
<br />
​And, I like wine. I take a drink on OFF meds days. Pharmacist told me no<br />
alcohol. I think within reason.​<br />
<br />
-- <br />
*Gayle*<br />

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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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Kay Strand | @kaystrand | Jul 31, 2016

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

Thanks so much.

Kay

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Sophie | @sophie1019 | Aug 1, 2016

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

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1 reply
Kay Strand | @kaystrand | Aug 1, 2016
In reply to @sophie1019 "Good morning i take my meds around 530 thru 700 p.m. and i eat so that..." + (show)
@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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Sophie | @sophie1019 | Aug 1, 2016

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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Katherine, Alumni Mentor | @katemn | Aug 1, 2016

.. 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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Sophie | @sophie1019 | Aug 1, 2016

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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1 reply
tessie | @tessie | Aug 1, 2016
In reply to @katemn "Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here ....." + (show)
@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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