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

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Sophie | @sophie1019 | Aug 4, 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

Jump to this post

We must have started meds around the same time. I feel good too. Tomorrow i will have lsb work done since my doc wanted me to go thru the first month to see if i had any side effects. I was told that if you can make it thru the first month you should be good... hopefully that is true..
If so, thank God!!!!!

REPLY
Kay Strand | @kaystrand | Aug 4, 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

Jump to this post

Sophie
I'm only one week into meds and my first blood work is 2 weeks after start. I think feeling good is a good sign you are tolerating them and fingers crossed your blood work will be good. I heard drink tons of water.

Let me know.
Kay

REPLY
Ruh | @ruhdesb | Aug 5, 2016

This past year, after 30 or more years of coughing and trying to get a diagnosis for as long, I was finally given a name, MAC and bronchiectasis . My pulmonary Dr. wants to go the antibiotic route, the infectious disease Dr. said the side effects might be worse than the disease. I am 78 and thinking....I would rather live with this 52% lung capacity than suffer the utter fatigue of the side effects of the drugs. I am solo, an active traveler with a home in another country. I am having a hard time coming to terms with: antibiotics, nausea, fatigue, bed or keep going until I can't anymore. So many discussions relate you feel worse than better. What to do?

REPLY
3 replies
Ali Skahan | @aliskahan | Aug 5, 2016
In reply to @ruhdesb "This past year, after 30 or more years of coughing and trying to get a diagnosis..." + (show)
@ruhdesb

This past year, after 30 or more years of coughing and trying to get a diagnosis for as long, I was finally given a name, MAC and bronchiectasis . My pulmonary Dr. wants to go the antibiotic route, the infectious disease Dr. said the side effects might be worse than the disease. I am 78 and thinking....I would rather live with this 52% lung capacity than suffer the utter fatigue of the side effects of the drugs. I am solo, an active traveler with a home in another country. I am having a hard time coming to terms with: antibiotics, nausea, fatigue, bed or keep going until I can't anymore. So many discussions relate you feel worse than better. What to do?

Jump to this post

Hi @ruhdesb, welcome to Connect! I moved your message over to this ongoing thread about MAC. I'm glad you reached out because we have a great/very active MAC community here on Connect.

Please meet @katemn @sophie1019 @kaystrand @justjanet @tessie @turtle3656 @jillnalani @Paula_MAC2007 @janovr @pamelasc1 @cathyt and @pamelasc1

Here are some other MAC threads that may be of interest to you:
MAC/MAI: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=1
MAC - Get a second opinion! https://connect.mayoclinic.org/discussion/get-a-second-opinion/
How long do side effects of meds last? MAC https://connect.mayoclinic.org/discussion/how-long-do-side-effects-of-meds-last/

REPLY
Katherine, Alumni Mentor | @katemn | Aug 5, 2016
In reply to @ruhdesb "This past year, after 30 or more years of coughing and trying to get a diagnosis..." + (show)
@ruhdesb

This past year, after 30 or more years of coughing and trying to get a diagnosis for as long, I was finally given a name, MAC and bronchiectasis . My pulmonary Dr. wants to go the antibiotic route, the infectious disease Dr. said the side effects might be worse than the disease. I am 78 and thinking....I would rather live with this 52% lung capacity than suffer the utter fatigue of the side effects of the drugs. I am solo, an active traveler with a home in another country. I am having a hard time coming to terms with: antibiotics, nausea, fatigue, bed or keep going until I can't anymore. So many discussions relate you feel worse than better. What to do?

Jump to this post

Hello Ruh, so sorry this has happened to you .. but you have found a good place! Many of us have had similar journeys .. if I was sitting in your shoes what I would do is not make a decision today about what to do .. I would read through the 2 pages of this forum and then go to the Forum:
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=10

.. read also through those pages. See that MANY others have been in your shoes .. have shared your fears .. BUT have bitten the bullet .. gone on the antibiotics .. AND have come out on the other side. Ruh, ONLY you can decide what is best for you .. it is YOUR journey. You get to decide what is best for you. Your only responsibility is to decide after doing your "Due Diligence" of educating yourself to your options. Personally I feel your Doctor was WRONG to tell you the side effects might be worse than the disease. THAT ATTITUDE kept me from going on the meds until I got sicker and got a SECOND quite serious mycobacterium! For one thing .. the side effects taper off for most people .. or DON'T HAPPEN AT ALL! (A quote I had on my bathroom mirror was: Remember .. All medicines may cause side effects, but many people have no, or minor, side effects!)

My story is that I am 73 next month .. was on 4-5 antibiotics for thirty months with very bearable side effects .. have been stable since May 2014. I also have MAC, Bronchiectasis and Reactive Airway Disease. I also am an active traveler .. just got back from France in July .. am departing for Italy end of August .. planning a trip to Eastern Europe in December! And I traveled all the time I was on the meds .. took them with me .. paced myself .. took care of myself. Health took priority.

But as I started out .. only YOU can decide what is best for you. Just educate yourself before you make that decision .. you owe it to yourself. Whatever decision you make .. we are all here for you .. we are all on this journey together. You will find a great group of women trying to help each other through this together! Sending you a hug and Lots of positive energy! Katherine

REPLY
Kay Strand | @kaystrand | Aug 6, 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

Jump to this post

Jill
I'm a week in and have all of the above except thirst, but I drink so much water always that might be why.

I take my E and azithromycin at dinner and due to being pretty sure Rifampin is the insomnia culprit taking it in AM. I hope to sleep better tonight.

The nausea is horrid, hoping that subsides over time. My doc and people on this forum say it does. There are people who can't tolerate the drugs, I am going to give it my very best shot. I do understand that for some it's life quality. Bodies are all different.

Hope you feel better soon, hope info too 😉

Kay S

REPLY
tessie | @tessie | Aug 6, 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

Jump to this post

hi, Jill Etibi (ethambutol 400 mg) made me ill. Too much running to the bathroom. The doc changed it for me. Regardless, takes me 3-hrs to feel fairly normal after taking meds.
As you said, bodies are all different.

REPLY
Sophie | @sophie1019 | Aug 6, 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

Jump to this post

I had a little diarrhea in the beginning, no problems now....

REPLY
JanetJ | @justjanet | Aug 7, 2016
In reply to @ruhdesb "This past year, after 30 or more years of coughing and trying to get a diagnosis..." + (show)
@ruhdesb

This past year, after 30 or more years of coughing and trying to get a diagnosis for as long, I was finally given a name, MAC and bronchiectasis . My pulmonary Dr. wants to go the antibiotic route, the infectious disease Dr. said the side effects might be worse than the disease. I am 78 and thinking....I would rather live with this 52% lung capacity than suffer the utter fatigue of the side effects of the drugs. I am solo, an active traveler with a home in another country. I am having a hard time coming to terms with: antibiotics, nausea, fatigue, bed or keep going until I can't anymore. So many discussions relate you feel worse than better. What to do?

Jump to this post

Hi Ruhdesb,
I don't have a lot to offer in terms of experience because I haven't started treatment yet - I was just diagnosed earlier this year. I'm meeting with a new team August 19th and will find out more about what I need to do. But, in reading everything on this forum - and I've read EVERYTHING! 🙂 It looks like in some cases (please correct me if I'm misspeaking here, Katherine) I think there are times where if it turns out that the side effects turn out to be too much for the patient they can sometimes cut back to three times a week. I don't remember if that increases the length of time of treatment. I guess what I'm trying to say is there are always some options with this. If Plan A doesn't work, go on to Plan B, etc. Of course it's up to you but you have nothing to lose by trying. You're in complete control. And you have so much support here with suggestions on dealing with side effects, and anything else that goes along with dealing with this. Whatever your choice is, we are here for you. Good luck. Janet

REPLY
Katherine, Alumni Mentor | @katemn | Aug 7, 2016

Hello Rhudesb .. I just LOVE Janet's attitude and approach of Plan A and Plan B .. what a GREAT idea! Now Ruhdesb .. didn't I tell you what wonderful and supportive people we have on this Forum? Just stick with us and you will be just fine .. I know you will make the right decision for YOU after you have educated yourself to your options. Sending you a hug .. because I know this is a tough time right now! Katherine

REPLY
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