(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

@katemn

Hello Jill, you are so correct! As you know I am big on “due diligence” and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:

Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine

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Hi Kate and all, my specialist said she was at a MAC confrence in USA in May 2016 and they were saying that Rifampin was causing to many other problems so now they advise taking with food. I cannot find this information anywhere else. I would like to now if any one else has had the same information from their specialist. I am hesitant to take with food with all the other information in Rifampin but want to trust my specialist.

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@katemn

Hello Jill, you are so correct! As you know I am big on “due diligence” and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:

Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine

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I have taken it with food since I started taking it in May.  My pharmacist said it was fine and the Dr mentioned taking with food, so I knew no different.  When people still started talking in here that it should not be taken with food I did some googling and found 1 site said it’s fine to take with food, it may reduce effectiveness by 30%.

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@katemn

Hello Jill, you are so correct! As you know I am big on “due diligence” and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:

Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine

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Thanks Jill, it is so hard to know whats best when everything is changing all the time. Maby they should give us a bit higher dose to compensate and take it with food to help our stomach. This is such an evolving situating, makes it very difficult to know what to do for the best. Think I will take without food if stomach is all good but when stomach is already burning will take it with food.Take care

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@katemn

Hello Jill, you are so correct! As you know I am big on “due diligence” and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:

Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine

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Jill
How have you been feeling since starting meds? I started 9 days ago. I’m much better than I was when I got to full dose this past weekend.
I just feel a little shaky, loss of appetite and don’t sleep as well as normal. Did you ever get to feeling pretty normal?

Thx
Kay

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Still have fevers and night sweats.  My iron was low, reg dr suggested over the counter iron pill.  Tiredness hasn’t been as bad since I started taking that.  I have a cough twice a day it seems, but my 4yr old and husband do too, so think we all have something.  I’ve had a hoarse voice for months so going to ent about that Friday.  I’ve never had any trouble sleeping at night and my cough has gotten better over time.  Just wish fevers and voice would straighten up.  I see my ID dr next week and waiting for lung dr to tell me results of ct and next step from his side.  My upper arms hurt and RA dr took xray and I have a calcium deposit on my tendon but she wants okay frim ID dr to inject cortisone in my shoulder.Still plugging along but at least making some progress…though I wish it was faster.

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@heathert

Hi all , I have just been diagnosed with borderline Asthma(as I only have a small cavity and some nodules she doesnt think imy MAI should cause shortness of breath) and put on Seretide inhaler, the seretide instructions say not to take if you have TB or serious infection, as NTM is similar to TB and an infection, I am concerned, does anybody else on here have asthma and on an inhaler? Think I will call the GlaxoSmithKline and check what they think.

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Hello Heathert, for me .. Asthma really runs in my family .. father, mother, grandmother and great grandmother .. so when I was initially diagnosed with Asthma and put on various inhalers I was not surprised .. BUT it was NOT Asthma .. it was REALLY Mai/MAC that was finally diagnosed with a sputum sample. I can only tell you that for me the various inhalers did not help but instead triggered various side effects .. especially migraines. For me currently I take two puffs twice a day of both Qvar and Atrovent. For me they work .. BUT everyone’s body is different. My advise to you is do your “due diligence” .. and don’t give up until you find an inhaler that works for YOU!! There are SO many out there!! Just google them .. you’d be amazed! These are just some of the ones I tried that didn’t work for me .. Albuterol, Xopenex HFA, Advair,Pulmicort, Asmanex! .. and see I didn’t give up till I found what worked for me. That is just what you will have to do. Work it till it works for you! Sending you a hug! Katherine

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@katemn

Hello Jill, you are so correct! As you know I am big on “due diligence” and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:

Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine

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Hello Heatert, I will have to defer to others on this since I am not actively seeing my Pulmonologist at this time .. am now on an annual basis unless I see that I have an issue. I will not see him again for months.

However I have a VERY knowledgeable Pharmacist who I trust a great deal .. frankly most doctors have very little training in pharmaceuticals .. I ALWAYS go to my Pharmacist to get the nitty gritty!! THEY are the ones with the background and the proper training. So I will reach out to her and see what she can dig up on this. When/if I hear I will get back to our Forum. Hugs to all! Katherine

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@heathert

Hi all , I have just been diagnosed with borderline Asthma(as I only have a small cavity and some nodules she doesnt think imy MAI should cause shortness of breath) and put on Seretide inhaler, the seretide instructions say not to take if you have TB or serious infection, as NTM is similar to TB and an infection, I am concerned, does anybody else on here have asthma and on an inhaler? Think I will call the GlaxoSmithKline and check what they think.

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Thanks Katherine, I do wonder if it is the MAC/MAI but am told that my MAI is to minimal to cause shortness of breath by one doc and told it could cause it by another so dont know.Thanks for the advice. Did you take your inhalers during your MAI treatment?

REPLY
@heathert

Hi all , I have just been diagnosed with borderline Asthma(as I only have a small cavity and some nodules she doesnt think imy MAI should cause shortness of breath) and put on Seretide inhaler, the seretide instructions say not to take if you have TB or serious infection, as NTM is similar to TB and an infection, I am concerned, does anybody else on here have asthma and on an inhaler? Think I will call the GlaxoSmithKline and check what they think.

Jump to this post

Yes, heathert, I definitely did use the inhaler Qvar all through my treatment .. the Atrovent was added later on in the treatment. I find they help a lot in coughing up sputum .. even better than the physical things I’ve tried. That has worked for me at least. Everyone is different of course. I kind of consider they as part of my lung health routine. Just keep trying things till you find what works for you! Katherine

REPLY
@katemn

Hello Jill, you are so correct! As you know I am big on “due diligence” and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:

Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine

Jump to this post

When I was first diagnosed with MAC in February 2016 I was put on a cocktail of three drugs, Rifampin was one of them. By the second day my throat had closed up, making it almost impossible to eat. Shortly after that fatigue had set in and my ability to think clearly was impaired. I spent the next three weeks barely moving off the couch. At the end of this period I broke out in hives so severe they covered my entire body. I despaired that this would be the new normal for me. The hives actually saved me, as the situation was so bad my pulmonologist pulled me off all drugs for 2 weeks till the hives disappeared. As soon as the Rifampin was out of my system, my head cleared and I could eat. I lost six pounds during that time.

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@katemn

Hello Jill, you are so correct! As you know I am big on “due diligence” and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:

Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine

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Wow, suzieapples, it sounds like you had a bad allergic reaction to the Rifampin. Hope you are feeling better this summer.

REPLY
@katemn

Hello Jill, you are so correct! As you know I am big on “due diligence” and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:

Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine

Jump to this post

Suzieapples,
Did you go off all drugs or just Rifampin. I’ve been struggling with the 3 for 11 days but no hives and I do feel slightly better. My doc said if the Rifampin continued to be so tough on me, she had another drug as an option.

Anyway, what are you currently doing for your MAC? How are you feelin?

Hope you are AOK.
Kay

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