1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- 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
- 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!

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

rits | @rits | May 12, 2020
In reply to @pamelasc1 "This is about taking prednisone to clear up what might be inflammation in my bronchial tubes......" + (show)
@pamelasc1

This is about taking prednisone to clear up what might be inflammation in my bronchial tubes... I have MAC, bronchiectasis and pseudemonas but those are all under control as of today. About 6 weeks ago, after feeling great for many months, I noticed I was getting breathless with very little activity. I am taking Lung Health and NAC along with Vit D. This came out of nowhere. Finally spoke to my lung doctor who thinks it might be this inflammation and he wants me to take prednisone for two weeks to see if that will help. Has anyone taken prednisone? Can anyone give me insight as to going this route? I am not coughing, I feel well in all other regards and at rest my oxygen is at 96. Thanks so much, Pam

Jump to this post

Prednisone is a drug that people love and hate. Being a corticosteroid, it relieves inflammation so we lung patients breathe better. But it has bad side effects, although most are associated with long term use rather than the short burst your doctor is recommending. My doctor says that mycobacterium like steroids so she doesn't want me to take them. I would need to be really, REALLY sick to take prednisone which, being an oral med goes throughout the body. I do inhale Symbicort which has a steroid as one if its drugs. My doctor doesn't like it but my lungs are in such bad shape that I can't function without it.

With our history of lung bacteria, I would hesitate to take prednisone. Budesonide, the steroid in Symbicort, is available as a nebulized drug which means it would go directly into the lungs with very little going into the blood and then throughout the body. Or, you might try one of the many inhaled bronchodilators to see if they would help. Pred should be a last resort.

Jmo.

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2 replies
irene5 Irene Estes | @irene5 | May 12, 2020
In reply to @rits "Prednisone is a drug that people love and hate. Being a corticosteroid, it relieves inflammation so..." + (show)
@rits

Prednisone is a drug that people love and hate. Being a corticosteroid, it relieves inflammation so we lung patients breathe better. But it has bad side effects, although most are associated with long term use rather than the short burst your doctor is recommending. My doctor says that mycobacterium like steroids so she doesn't want me to take them. I would need to be really, REALLY sick to take prednisone which, being an oral med goes throughout the body. I do inhale Symbicort which has a steroid as one if its drugs. My doctor doesn't like it but my lungs are in such bad shape that I can't function without it.

With our history of lung bacteria, I would hesitate to take prednisone. Budesonide, the steroid in Symbicort, is available as a nebulized drug which means it would go directly into the lungs with very little going into the blood and then throughout the body. Or, you might try one of the many inhaled bronchodilators to see if they would help. Pred should be a last resort.

Jmo.

Jump to this post

Very well said!

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america | @america | May 12, 2020
In reply to @pamelasc1 "This is about taking prednisone to clear up what might be inflammation in my bronchial tubes......" + (show)
@pamelasc1

This is about taking prednisone to clear up what might be inflammation in my bronchial tubes... I have MAC, bronchiectasis and pseudemonas but those are all under control as of today. About 6 weeks ago, after feeling great for many months, I noticed I was getting breathless with very little activity. I am taking Lung Health and NAC along with Vit D. This came out of nowhere. Finally spoke to my lung doctor who thinks it might be this inflammation and he wants me to take prednisone for two weeks to see if that will help. Has anyone taken prednisone? Can anyone give me insight as to going this route? I am not coughing, I feel well in all other regards and at rest my oxygen is at 96. Thanks so much, Pam

Jump to this post

Hi everyone, I do take prednisone but it’s a very low dose and even though it works against my immune system... I still take it for RA everyday. It helps with the inflammation. I also do the nebulizer with albuterol 3 times a week. Be safe all. Rita

REPLY
Brenda R. | @brigby | May 12, 2020
In reply to @rits "Prednisone is a drug that people love and hate. Being a corticosteroid, it relieves inflammation so..." + (show)
@rits

Prednisone is a drug that people love and hate. Being a corticosteroid, it relieves inflammation so we lung patients breathe better. But it has bad side effects, although most are associated with long term use rather than the short burst your doctor is recommending. My doctor says that mycobacterium like steroids so she doesn't want me to take them. I would need to be really, REALLY sick to take prednisone which, being an oral med goes throughout the body. I do inhale Symbicort which has a steroid as one if its drugs. My doctor doesn't like it but my lungs are in such bad shape that I can't function without it.

With our history of lung bacteria, I would hesitate to take prednisone. Budesonide, the steroid in Symbicort, is available as a nebulized drug which means it would go directly into the lungs with very little going into the blood and then throughout the body. Or, you might try one of the many inhaled bronchodilators to see if they would help. Pred should be a last resort.

Jmo.

Jump to this post

@rits Very well explained. I agree. I take Budesonide 2x daily as an inhalant, through my sinus cleansing device called a “Navage.” I hate that I must resort to it, but I suffer in my sinuses, and then my lungs, if I don’t comply. Which mycobacterium sub-species do you have? (I culture m. Abscessus, MAC, MAI.) I also regularly culture Acintobacter and M. Abscessus in my sinuses.

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1 reply
rits | @rits | May 12, 2020
In reply to @brigby "@rits Very well explained. I agree. I take Budesonide 2x daily as an inhalant, through my..." + (show)
@brigby

@rits Very well explained. I agree. I take Budesonide 2x daily as an inhalant, through my sinus cleansing device called a “Navage.” I hate that I must resort to it, but I suffer in my sinuses, and then my lungs, if I don’t comply. Which mycobacterium sub-species do you have? (I culture m. Abscessus, MAC, MAI.) I also regularly culture Acintobacter and M. Abscessus in my sinuses.

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Hi Brenda. I HAD MAC and pseudomonas and klebsiella also showed up in my sputum samples a couple if times. I also have had different fungi show up. I say HAD because none of the bacteria have shown up since last June. (Yay!) I have a telemedicine appointment with my specialist Friday morning and I hope she will give the word to stop the azithromycin and ethambutol I have been taking for 13 months. I currently do have candida fungi and some staph.

Wow. You have so many kinds of bugs! And in both your sinuses and lungs! Good grief. I hope antibiotics work to kill the darn things.

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pamelasc | @pamelasc1 | May 13, 2020

Thank you everyone for writing down your experiences with prednisone.. I am hesitant to use it, even for two weeks. I might try using my nebulizer with albuterol first and see if that brings any relief. I will let you know. Just want to say what an amazing and supportive group this is and how important you all are to me! Thank you for taking the time to write. Pam

REPLY
2 replies
pamelasc | @pamelasc1 | May 13, 2020
In reply to @pamelasc1 "Thank you everyone for writing down your experiences with prednisone.. I am hesitant to use it,..." + (show)
@pamelasc1

Thank you everyone for writing down your experiences with prednisone.. I am hesitant to use it, even for two weeks. I might try using my nebulizer with albuterol first and see if that brings any relief. I will let you know. Just want to say what an amazing and supportive group this is and how important you all are to me! Thank you for taking the time to write. Pam

Jump to this post

After writing my last message I went online to read about using the albuterol - what I found was that it does NOT clear the inflammation; it just acts as a temporary fix to shortness of breath. So I think I am going to go with the prednisone and only use it for the two weeks, then see where that takes me. Pam

REPLY
1 reply
irene5 Irene Estes | @irene5 | May 13, 2020
In reply to @pamelasc1 "After writing my last message I went online to read about using the albuterol - what..." + (show)
@pamelasc1

After writing my last message I went online to read about using the albuterol - what I found was that it does NOT clear the inflammation; it just acts as a temporary fix to shortness of breath. So I think I am going to go with the prednisone and only use it for the two weeks, then see where that takes me. Pam

Jump to this post

@pamelasc1 I think that should be fine. I had to take prednisone when I got poison ivy in my lungs due to our neighbor burning it and my inhaling it. (Talk about bad luck) Prednisone was a godsend for me. Generally, MAC patients don’t take prednisone, but when you need it, you need it! irene5

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1 reply
lindam272 | @lindam272 | Jun 1, 2020

Good information in my cystic fibrosis newsletter that applies to infectious disease patients also. It interferes with the formation of biofilms which protects the bacteria which forms in our lungs when infected. https://cysticfibrosisnewstoday.com/2020/06/01/pravibismane-granted-fda-orphan-drug-designation-for-cf-lung-infections/
Be well~ Linda Martin

REPLY
1 reply
lorifilipek | @lorifilipek | Jun 1, 2020
In reply to @lindam272 "Good information in my cystic fibrosis newsletter that applies to infectious disease patients also. It interferes..." + (show)
@lindam272

Good information in my cystic fibrosis newsletter that applies to infectious disease patients also. It interferes with the formation of biofilms which protects the bacteria which forms in our lungs when infected. https://cysticfibrosisnewstoday.com/2020/06/01/pravibismane-granted-fda-orphan-drug-designation-for-cf-lung-infections/
Be well~ Linda Martin

Jump to this post

@lindam272 Thanks! I did some searching. Microbion suggests it will help those with MAC, as well: "In addition to CF-related lung infection, there are multiple lower respiratory tract infections and conditions where the presence of microbial pathogens and their associated biofilm contribute to lung function decline. Infectious pathogens such as Pseudomonas spp., Staphylococcus spp., Streptococcus spp., Mycobacterium spp., or Haemophilus spp. may contribute to lung diseases such as non-CF bronchiectasis, bronchitis, community- or ventilator-associated pneumonia, non-tuberculous mycobacterium infection, etc., that are expected to benefit from an inhaled application of pravibismane or other Microbion compounds." https://microbioncorp.com/pipeline/respiratory

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