(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@angiejohnson

@sounder27 I just thought I would chime in on the Arikayce. I have been on it since January 16. Interesting that your doc says one week on, one off. I am recommended daily, but when I lost my voice my doc cut it back to 3 times per week. That has really been my only side effect. I am back to taking it daily, as that is what is recommended by the drug company. It is very expensive, but they provided me a copay card. I pay nothing for it.

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angiejohnson. I just reread you post and realized it was the drug company. Did you contact them directly?

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@suzyqueue

I was diagnosed in January 2018. Still to this day – no improvement. I've had things get worse then get a little better but not much improvement of the initial damage done in my lungs. I'm now on the inhaled Amikacin along with the big 3 still. Hopefully it will help.

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@suzyqueue Thanks Suzy, and good luck. Hugs to you

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@jkiemen

@anniepie @windwalker I think at 6 months after starting they said things were about the same "maybe slight improvement in one area" but my last one was worse in one area and a bit better in another.

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@jkiemen Thanks Jo Ann. Hugs to you

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@heathert

@suyqueue Hopefully it will help, it helped me a great deal and the side effects were minimal. Take Care

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@heathert Thanks Heather — you are always so kind and helpful. Hugs

Liked by heathert

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@sounder27

angiejohnson. I just reread you post and realized it was the drug company. Did you contact them directly?

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I expressed concern of cost when the drug company called me. They arranged for the copay card.

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I'm very curious about alternatives to the Big 3, which I've been on for 4 months. I have recently had side effects, which I believe are from the azithromycin and I'm seeing my doctor next week. I am not prepared to just tolerate the side effects because of the benefits of treating the MAC and will be asking for a referral to a MAC specialist in a larger city near us. The Amikacin sounds like an expensive but reasonable alternative (is it used alone or in combination with other drugs?) and it will be one of the things I will research and discuss with my doctor when I see him. Having MAC has already cost us a lot of money in terms of cancelled trips, reverse osmosis system, etc etc and had a huge effect on our quality of life so another cost is something that I can live with if I have to.

Thanks for everyone's contributions to this forum. I have learned here than anywhere else and, although I may have become a nuisance to my doctor, I feel it benefits me in my efforts to get this disease under control.

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@kathyhg

I'm very curious about alternatives to the Big 3, which I've been on for 4 months. I have recently had side effects, which I believe are from the azithromycin and I'm seeing my doctor next week. I am not prepared to just tolerate the side effects because of the benefits of treating the MAC and will be asking for a referral to a MAC specialist in a larger city near us. The Amikacin sounds like an expensive but reasonable alternative (is it used alone or in combination with other drugs?) and it will be one of the things I will research and discuss with my doctor when I see him. Having MAC has already cost us a lot of money in terms of cancelled trips, reverse osmosis system, etc etc and had a huge effect on our quality of life so another cost is something that I can live with if I have to.

Thanks for everyone's contributions to this forum. I have learned here than anywhere else and, although I may have become a nuisance to my doctor, I feel it benefits me in my efforts to get this disease under control.

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The inhaled Amikacin is typically used with the Big 3 at the same time. For me the symptoms of the disease were much worse than the side effects of the big 3.

Liked by anniepie

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@suzyqueue

The inhaled Amikacin is typically used with the Big 3 at the same time. For me the symptoms of the disease were much worse than the side effects of the big 3.

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The same for me (symptoms worse than side effects) but I think that changes in my heart rhythm are worth paying attention to. I guess I’ll see soon enough what my doctor says. In the least, another opinion never hurts!

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@kathyhg

The same for me (symptoms worse than side effects) but I think that changes in my heart rhythm are worth paying attention to. I guess I’ll see soon enough what my doctor says. In the least, another opinion never hurts!

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Kathyhg, I cannot take the big three because of a heart condition called atrial fibrillation. 2 of the big three cause atrial flutter and rapid heartbeat and put me at risk for stroke. Also the xarelto that I take for blood thinning is contraindicated with the big three drugs. If you are having heart issues with the big three then you may need to check in with a cardiologist to find out why. My best wishes to you.

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@sounder27

Kathyhg, I cannot take the big three because of a heart condition called atrial fibrillation. 2 of the big three cause atrial flutter and rapid heartbeat and put me at risk for stroke. Also the xarelto that I take for blood thinning is contraindicated with the big three drugs. If you are having heart issues with the big three then you may need to check in with a cardiologist to find out why. My best wishes to you.

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Which of the two caused it? Thanks

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@kathyhg

Which of the two caused it? Thanks

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Kathyhg, the azythromycin and the one that begins with flutac…something. They did not cause the afib but rather they aggravate the condition that already existed. That is why we are considering the Arikayce. Are you experiencing rapid heartbeat? I am not a doctor and cannot diagnose anything, but it is good that you are getting this checked. The symptoms of MAC and bronchiectasis are indeed life changing and sometimes debilitating and I know we all will do whatever it takes to be rid of them. I am grateful to have this forum and the combined experiences of so many caring and sincerely helpful people who share their journeys. I don’t want to worry you or cause you to question what has been for many a successful treatment, I just wanted to share my experience and be as helpful as I can. Best to you.

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Thanks. I’m on ethambutol, rifampin and azithromycin. The only one I see causes irregular heart beat is azithromycin but I’ll do some more reading. I already have a pacemaker (is 63 and I got it at 55) so I’m super cautious about anything that affects my heart. I’ve been referred to a cardiologist and just waiting for the appointment. I’ll likely see my respirologist before I see the cardiologist, though, so I want to be prepared for that visit as well.

It might just be my experience but I find I need to be on top of things all the time. The respirologist I see treats a whole range of respiratory conditions and I think it’s time for a consult to the MAC specialist – thus my preparation. The respirologist told me st the onset of this process that he’d need to refer me if there were complications with my treatment.
I have leaned so much in this forum. Although no one gives advice, it is helpful to hear other people’s experience as this helps me to formulate questions and to make decisions about my own care.

Thanks again,

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@kathyhg

Thanks. I’m on ethambutol, rifampin and azithromycin. The only one I see causes irregular heart beat is azithromycin but I’ll do some more reading. I already have a pacemaker (is 63 and I got it at 55) so I’m super cautious about anything that affects my heart. I’ve been referred to a cardiologist and just waiting for the appointment. I’ll likely see my respirologist before I see the cardiologist, though, so I want to be prepared for that visit as well.

It might just be my experience but I find I need to be on top of things all the time. The respirologist I see treats a whole range of respiratory conditions and I think it’s time for a consult to the MAC specialist – thus my preparation. The respirologist told me st the onset of this process that he’d need to refer me if there were complications with my treatment.
I have leaned so much in this forum. Although no one gives advice, it is helpful to hear other people’s experience as this helps me to formulate questions and to make decisions about my own care.

Thanks again,

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@kathyhg….agree with you re all valuable information shared on this site….have you also signed into NTMINFO.org for links to additional information…or gone to youtube for videos…l just typed in "NTM info" and a whole slew of awesome videos showed up….these are just a few of the resources from the web sites……also National Jewish Health will be having their annual NTM workshop for NTM patients and families on Saturday Sept 21,2019 from 830am to 4pm in Denver if you live near there or can get there…great news….it will be video taped and posted on line a few weeks after the event…so we can hear /see it if we cannot attend…Tdrell

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@tdrell

@kathyhg….agree with you re all valuable information shared on this site….have you also signed into NTMINFO.org for links to additional information…or gone to youtube for videos…l just typed in "NTM info" and a whole slew of awesome videos showed up….these are just a few of the resources from the web sites……also National Jewish Health will be having their annual NTM workshop for NTM patients and families on Saturday Sept 21,2019 from 830am to 4pm in Denver if you live near there or can get there…great news….it will be video taped and posted on line a few weeks after the event…so we can hear /see it if we cannot attend…Tdrell

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Thanks. I follow that forum and have read material there. It’s also very good but I tend to come back to this one more. I’m in Canada so Denver is a big trip for me right now.

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@kathyhg

Thanks. I’m on ethambutol, rifampin and azithromycin. The only one I see causes irregular heart beat is azithromycin but I’ll do some more reading. I already have a pacemaker (is 63 and I got it at 55) so I’m super cautious about anything that affects my heart. I’ve been referred to a cardiologist and just waiting for the appointment. I’ll likely see my respirologist before I see the cardiologist, though, so I want to be prepared for that visit as well.

It might just be my experience but I find I need to be on top of things all the time. The respirologist I see treats a whole range of respiratory conditions and I think it’s time for a consult to the MAC specialist – thus my preparation. The respirologist told me st the onset of this process that he’d need to refer me if there were complications with my treatment.
I have leaned so much in this forum. Although no one gives advice, it is helpful to hear other people’s experience as this helps me to formulate questions and to make decisions about my own care.

Thanks again,

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@kathyhg Hi Kathy! I really liked your last sentence. That is the precise intention of this group. I just met with my Mayo doctor last week and we discussed how each individual with mac should have a tailor-made treatment plan. Beware those that only use the Big 3 treatment plan or want to jump on those three meds at the first inclination of mac infection. BTW, my dr also said again that the biggest culprit of bronchiectasis and mac is GERD, otherwise known as acid reflux. If you treat that, then you may likely stop the infection and reinfection of mac. Many people have what is known as silent reflux; meaning there are no apparent symptoms. I make a list of questions before I see my dr also. When will you see your mac specialist?

Liked by tdrell, shooei, anniepie

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