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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

e345l | @e345l | May 3, 2016
In reply to @colleenyoung "@cacallahan, this is exactly the place to bring such problems. Here is where you can talk..." + (show)
@colleenyoung

@cacallahan, this is exactly the place to bring such problems. Here is where you can talk frankly about your fears and concerns with people who’ve been there. Tell us a bit more about the meds you’ll be taking and what concerns you the most.
What 4 medications will you be taking?
What side effects have you been told about? Which ones concern you the most?

Jump to this post

Hi, just wanted to comment on your situation. I am sorry you got so sick!
I was very lucky and never got sick on taking 3 meds-every day practically
all day long to avoid getting sick. For one year I did the azithromycin,
rifampin and ethambutol, the concentration as yours. Didn’t stop it. Next
9 months I took clarithromycin, 2 tablets daily, ethambutol 2 tablets daily
and 2 rifabutin daily.
Never got sick. I separated them from morning, noon and evening and it
worked great. I took heavy doses. We’ll see what the next meds I will be
on do, but so far I am grateful. Hope it gets better for you! Never took
the pill for nausea that you take. Hang in there!

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | May 3, 2016

@cacallahan and others on the meds for MAC/MAI —

There are at least 3 ‘standard’ drugs that work in synergy with each other. I’ve been on Rifampin, Ethambutol & Azithromycin since 2007-2008. Yes, I had side effects. See my previous messages on this blog.

IMPORTANT THINGS TO KEEP IN MIND:

1) THE NAMES OF THE DRUGS — there are different names for very similar (or the same) drugs
2) DOSAGE OF THE DRUGS – the amount is based on BODY WEIGHT. So 2 people here can be on the same drugs but in different dosages. My 1st pulmonologist had me on too high a dosage and my 2nd pulmonologist lowered the amount of one drug – – and it alleviated the nausea. Ask your doctor to verify that you are taking the correct dosage for your weight, if you have a concern.
3) SEVERITY OF MAC/MAI — this differs among us. My MAC was quite severe when diagnosed and required me taking the 3 drugs everyday. After several years and feeling better, the drugs were reduced to 3 days a week.
4) WHEN TO TAKE THE MEDS — per my pulmonologists at a teaching hospital (and I’ve written this earlier), I can take the drugs whenever I want, but consistency is the key. It doesn’t matter what time of day or night I take the drugs, or whether before or after food. They said to find what works for me, and to faithfully take them in this pattern.
5) SOURCE OF THE DRUGS — unfortunately, I’ve found when switching health insurance plans or pharmacies, that the same drugs can come from differing manufacturing centers. And the nausea can start all over again! So you can get a batch of the drugs that may cause nausea for you, depending on where they were manufactured.
5) TESTS — I’ve had 2 lung biopsies and 1 lung lavage (filling the lungs with fluid and suctioning out the fluid, cells & bacteria). My pulmonologist is very thorough and knowledgeable about MAC/MAI.

I am alive and feeling very good!! Some keys to treating your MAC/MAI:
1) take the meds faithfully (if you’ve been prescribed them)
2) get plenty of rest
3) EXERCISE to strengthen your lungs. I do Pilates and gentle Yoga 4-5 times a week. Try to briskly walk for 20 minutes a day.
4) Vitamin D – get yours checked. There’s a correlation between low Vitamin D & MAC.
5) Get your eyes checked routinely since one of the drugs can cause blindness. My ophthalmologist is familiar with the drugs & had another patient on them who he had to take off the drugs.
5) Talk with your pulmonologist about everything you don’t understand. Become your own advocate for your care – knowledge is power. This site has a lot of excellent practical information.
6) Avoid potential sources of bacteria . . . hot tubs, spas. I don’t take showers – just baths! (trying to be on the safe side). Take care of your lungs.
6) Stay positive! Sometimes hard to do.

Blessings to all!
Paula

REPLY
3 replies
nannette | @nannette | May 3, 2016
In reply to @Paula_MAC2007 "@cacallahan and others on the meds for MAC/MAI -- There are at least 3 'standard' drugs..." + (show)
@Paula_MAC2007

@cacallahan and others on the meds for MAC/MAI —

There are at least 3 ‘standard’ drugs that work in synergy with each other. I’ve been on Rifampin, Ethambutol & Azithromycin since 2007-2008. Yes, I had side effects. See my previous messages on this blog.

IMPORTANT THINGS TO KEEP IN MIND:

1) THE NAMES OF THE DRUGS — there are different names for very similar (or the same) drugs
2) DOSAGE OF THE DRUGS – the amount is based on BODY WEIGHT. So 2 people here can be on the same drugs but in different dosages. My 1st pulmonologist had me on too high a dosage and my 2nd pulmonologist lowered the amount of one drug – – and it alleviated the nausea. Ask your doctor to verify that you are taking the correct dosage for your weight, if you have a concern.
3) SEVERITY OF MAC/MAI — this differs among us. My MAC was quite severe when diagnosed and required me taking the 3 drugs everyday. After several years and feeling better, the drugs were reduced to 3 days a week.
4) WHEN TO TAKE THE MEDS — per my pulmonologists at a teaching hospital (and I’ve written this earlier), I can take the drugs whenever I want, but consistency is the key. It doesn’t matter what time of day or night I take the drugs, or whether before or after food. They said to find what works for me, and to faithfully take them in this pattern.
5) SOURCE OF THE DRUGS — unfortunately, I’ve found when switching health insurance plans or pharmacies, that the same drugs can come from differing manufacturing centers. And the nausea can start all over again! So you can get a batch of the drugs that may cause nausea for you, depending on where they were manufactured.
5) TESTS — I’ve had 2 lung biopsies and 1 lung lavage (filling the lungs with fluid and suctioning out the fluid, cells & bacteria). My pulmonologist is very thorough and knowledgeable about MAC/MAI.

I am alive and feeling very good!! Some keys to treating your MAC/MAI:
1) take the meds faithfully (if you’ve been prescribed them)
2) get plenty of rest
3) EXERCISE to strengthen your lungs. I do Pilates and gentle Yoga 4-5 times a week. Try to briskly walk for 20 minutes a day.
4) Vitamin D – get yours checked. There’s a correlation between low Vitamin D & MAC.
5) Get your eyes checked routinely since one of the drugs can cause blindness. My ophthalmologist is familiar with the drugs & had another patient on them who he had to take off the drugs.
5) Talk with your pulmonologist about everything you don’t understand. Become your own advocate for your care – knowledge is power. This site has a lot of excellent practical information.
6) Avoid potential sources of bacteria . . . hot tubs, spas. I don’t take showers – just baths! (trying to be on the safe side). Take care of your lungs.
6) Stay positive! Sometimes hard to do.

Blessings to all!
Paula

Jump to this post

Paula, thank you for all that wonderful information. I’m just starting the
three drugs and I have an even more specific question. I’m going to spread
my three throughout the day but for instance, the three ethambutols each
Monday, Wednesday and Friday…
Can I do one in the morning, one at noon and at night or do the three have
to be taken at one time. Same question for the 2 Rifampin pills…(and I
only have one Azithromycin to take). Nan

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | May 3, 2016

@nanette, Hello Nan, I hope you are doing OK.

RE: your question – can you spread your drugs out throughout the day? My questions to you: Did your doctor make a recommendation on how you should take them? Or your pharmacist?

When I initially began the drugs, my pulmonologist told me about former patients in the Clinic on the drugs, their experiences with them, how they took the drugs to overcome side effects, etc. He said I could take the drugs spread out throughout the day, take them all at one, take them in the morning or at night, with or without food, etc. In other words, he gave me his experience with other patients and told me to find what works FOR ME when taking the meds. Just to be sure to take them consistently each day. I’ve taken the drugs every which way – – except space them out throughout the day. I just would never remember to take them that way!

My suggestion to you is to ask your pharmacist or pulmonologist about the efficacy of taking 1 drug 3 times a day instead of all at once. They may have a different point of view.

Any other questions or comments, we’re all here to learn from – and help – each other.

Paula

REPLY
2 replies
nannette | @nannette | May 3, 2016
In reply to @Paula_MAC2007 "@nanette, Hello Nan, I hope you are doing OK. RE: your question - can you spread..." + (show)
@Paula_MAC2007

@nanette, Hello Nan, I hope you are doing OK.

RE: your question – can you spread your drugs out throughout the day? My questions to you: Did your doctor make a recommendation on how you should take them? Or your pharmacist?

When I initially began the drugs, my pulmonologist told me about former patients in the Clinic on the drugs, their experiences with them, how they took the drugs to overcome side effects, etc. He said I could take the drugs spread out throughout the day, take them all at one, take them in the morning or at night, with or without food, etc. In other words, he gave me his experience with other patients and told me to find what works FOR ME when taking the meds. Just to be sure to take them consistently each day. I’ve taken the drugs every which way – – except space them out throughout the day. I just would never remember to take them that way!

My suggestion to you is to ask your pharmacist or pulmonologist about the efficacy of taking 1 drug 3 times a day instead of all at once. They may have a different point of view.

Any other questions or comments, we’re all here to learn from – and help – each other.

Paula

Jump to this post

Paula, my doctor nor my pharmacist made recommendations so I should have
asked. But I have a close friend who is a pharmacist and I will ask her.
Thank you. Nan

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | May 3, 2016

Nan, how surprising your doc didn’t give you info on taking the drugs! But you have a friend who is a pharmacist that you can ask – that’s great! Keep us posted on how you’re doing.

REPLY
Lisa Y | @tutti | May 3, 2016
In reply to @katemn "Hello e345l, will it be inhaled Amikacin if you go on it? If so .. let..." + (show)
@katemn

Hello e345l, will it be inhaled Amikacin if you go on it? If so .. let me know and I’ll let you know a couple of time saving things I did when I was on it! I know it took 30 months .. BUT the Amikacin finally licked that darn “abscesses” mycobacterium so in the end all the trouble was worth it! Good luck as we go forward on our shared journey!

Jump to this post

I haven’t started the meds yet. My infectious disease dr said 1 of the
drugs I will be taking, is administered through a pic line. Has anyone
taken a drug this way for their mycobacterium abscessus? I haven’t heard
anyone mention taking their meds this way??
Hope one of you can answer my question.
Thanks, Tutti

REPLY
Katherine, Alumni Mentor | @katemn | May 4, 2016
In reply to @katemn "Hello e345l, will it be inhaled Amikacin if you go on it? If so .. let..." + (show)
@katemn

Hello e345l, will it be inhaled Amikacin if you go on it? If so .. let me know and I’ll let you know a couple of time saving things I did when I was on it! I know it took 30 months .. BUT the Amikacin finally licked that darn “abscesses” mycobacterium so in the end all the trouble was worth it! Good luck as we go forward on our shared journey!

Jump to this post

THIS IS A LONG POST SO MEANT ONLY FOR e3451 .. rest of you can ignore it!

Hello e345l, when I was on inhaled Amikacin there was a stress on STERILIZATION! Really keeping things clean! Now since I stopped with the inhaled Amikacin 5/14 perhaps there is a new machine but

THESE WERE MY INSTRUCTIONS .. THEY MAY HAVE CHANGED SINCE 2011!!
1. If you wish to use Mayo Pharmacy, you will need to call the pharmacy to set up a mail order account. The phone number is 1-800-445-6326, and press “0” to speak with a live person. They will ask you for your mailing address as well as your credit card information and prescription insurance information, if not already on file. If you travel, just let them know to which address you wish to have your prescriptions sent.

2. Once you have an official amikacin prescription from Dr. Aksamit, contact the pharmacy and ask them to mail the Amikacin out to you. The first prescription will be for one vial, for your test dose. Once you receive the medication, please call your physician to arrange for the administration of your test dose. If your doctor is unfamiliar with this procedure, then s/he will need to contact Dr. Aksamit.

3. In addition to the amikacin, you will also need normal saline (which will be included) for diluting the amikacin prior to inhalation. Your doctor will also need to supply you with, or write a prescription for, a nebulizer (machine for administering inhaled medication).
USING
1.Use a clean syringe each time you enter an amikacin vial. Reorder the syringes each month when you refill the amikacin.

2. Needles/syringes should be disposed of by placing them in a “sharps container”. Syringes should be dropped into the container needle end first, and we do not recommend recapping the needle. While sharps containers can be purchased, you can also make your own by re-using an empty hard plastic bottle, such as one used for liquid laundry detergent, shampoo, wet wipes, coffee, etc. The container should be labeled, “Do Not Recycle: Household Sharps”, and may be placed with the cover on in the trash, though you may wish to check to see whether there are any sharps collection sites in your area (which are considered safer than placing sharps in your trash).

DAILY SCHEDULE
1.In 4-Cup Plastic Measuring Cup http://smile.amazon.com/Norpro-4-Cup-Plastic-Measuring-Cup/dp/B000HJBFFS/ref=sr_1_1?ie=UTF8&qid=1462336680&sr=8-1&keywords=plastic+4+cup+measuring+cup Took apart and washed the nebulizer parts in antibacterial dish soap in HOT water .. rinsed carefully in HOT water. Let sit overnight in to dry in measuring cup. In morning transferred clean parts into a “baby bottle sterilizer”. From the millions of things I had researched .. I had read about this trick .. a whole lot easier than trying to boil the parts for thirty months! By having a weeks supply of the nebulizer and this sterilizer .. I was able to make a frankly unpleasant task a little less unpleasant AND keep myself safe. Maybe someone else can come up with something better/easier but this is the best I could come up with. Mine was: The First Years Power of Steam Electric Steam Sterilizer from: http://smile.amazon.com/First-Years-Power-Electric-Sterilizer/dp/B002WN2B6O?ie=UTF8&keywords=baby%20bottle%20sterilizer&qid=1462337037&ref_=sr_1_12_s_it&s=baby-products&sr=1-12

TIP: REQUEST 90 DAY PRESCRIPTIONS FOR ALL YOUR ANTIBIOTICS .. THEN YOU HAVE JUST ONE CO PAY.

TIP The only other tip was we travel a lot so I purchase a 2nd Pari that was smaller but took longer. I would envy you if a newer unit has come out that would take a shorter time. Personally it always took me close to a half hour to get the Amikacin in my lungs .. no matter how deeply I tried to breathe .. AND if I tried not to pay too much attention to a TV program that I was trying to distract myself with! BUT I got healthy so DO IT! In the end all this is worth it .. GO FOR IT! Good luck .. hope some of this has helped.

TIP PRIOR TO BEGINNING my daily probiotics I got oral thrush. This was the recommendation: As far as the thrush goes.. generally approach is a trial and error sequence. First, nystatin swish and spit; then fluconazole, then clotrimazole 10 mg lozenges – taken up to every five hours. Other is a ‘magic mouthwash’ which has nystatin in it as well as Benadryl, hydrocortisone, and doxycycline. Recommend trial of clotrimazole next. If no improvement would try the mouth wash.

TIP MY UNIT: PARI VIOS LC Sprint, Deluxe I found the best price at Just Nebulizer $55.95 .. just checked .. still the best price I could find. Ask the doctor .. this is the one I used. http://justnebulizers.com/pari-vios-nebulizer.html?gclid=Cj0KEQjwmKG5BRDv4YaE5t6oqf0BEiQAwqDNfBm39YY5GKewgU0u12sOyKrzsuPl1iFF6-faEvvUjxkaAmQd8P8HAQ

TIP I then purchased Reusable Nebulizer Part No 023F35 : I PURCHASED SO WILL HAVE 7 NEBULIZERS-ONLY HAVE TO STERILIZE ONCE A WEEK! $14.95 ea but I was willing to do 7 for the convenience at a stressful time in life .. plus I wrote it off as a medical tax deduction. http://justnebulizers.com/pari-lc-sprint-reusable-nebulizer-set.html?gclid=CLr_vtvLv8wCFQwxaQodgMwGBg

REPLY
Katherine, Alumni Mentor | @katemn | May 4, 2016
In reply to @Paula_MAC2007 "@cacallahan and others on the meds for MAC/MAI -- There are at least 3 'standard' drugs..." + (show)
@Paula_MAC2007

@cacallahan and others on the meds for MAC/MAI —

There are at least 3 ‘standard’ drugs that work in synergy with each other. I’ve been on Rifampin, Ethambutol & Azithromycin since 2007-2008. Yes, I had side effects. See my previous messages on this blog.

IMPORTANT THINGS TO KEEP IN MIND:

1) THE NAMES OF THE DRUGS — there are different names for very similar (or the same) drugs
2) DOSAGE OF THE DRUGS – the amount is based on BODY WEIGHT. So 2 people here can be on the same drugs but in different dosages. My 1st pulmonologist had me on too high a dosage and my 2nd pulmonologist lowered the amount of one drug – – and it alleviated the nausea. Ask your doctor to verify that you are taking the correct dosage for your weight, if you have a concern.
3) SEVERITY OF MAC/MAI — this differs among us. My MAC was quite severe when diagnosed and required me taking the 3 drugs everyday. After several years and feeling better, the drugs were reduced to 3 days a week.
4) WHEN TO TAKE THE MEDS — per my pulmonologists at a teaching hospital (and I’ve written this earlier), I can take the drugs whenever I want, but consistency is the key. It doesn’t matter what time of day or night I take the drugs, or whether before or after food. They said to find what works for me, and to faithfully take them in this pattern.
5) SOURCE OF THE DRUGS — unfortunately, I’ve found when switching health insurance plans or pharmacies, that the same drugs can come from differing manufacturing centers. And the nausea can start all over again! So you can get a batch of the drugs that may cause nausea for you, depending on where they were manufactured.
5) TESTS — I’ve had 2 lung biopsies and 1 lung lavage (filling the lungs with fluid and suctioning out the fluid, cells & bacteria). My pulmonologist is very thorough and knowledgeable about MAC/MAI.

I am alive and feeling very good!! Some keys to treating your MAC/MAI:
1) take the meds faithfully (if you’ve been prescribed them)
2) get plenty of rest
3) EXERCISE to strengthen your lungs. I do Pilates and gentle Yoga 4-5 times a week. Try to briskly walk for 20 minutes a day.
4) Vitamin D – get yours checked. There’s a correlation between low Vitamin D & MAC.
5) Get your eyes checked routinely since one of the drugs can cause blindness. My ophthalmologist is familiar with the drugs & had another patient on them who he had to take off the drugs.
5) Talk with your pulmonologist about everything you don’t understand. Become your own advocate for your care – knowledge is power. This site has a lot of excellent practical information.
6) Avoid potential sources of bacteria . . . hot tubs, spas. I don’t take showers – just baths! (trying to be on the safe side). Take care of your lungs.
6) Stay positive! Sometimes hard to do.

Blessings to all!
Paula

Jump to this post

Hello e345l, (you really must tell us your first name .. e345l seems SO cold!)
Have you heard of the Leprosy drug or shot? Nope have not heard a thing about it! If you google it .. you merely come up things related to leprosy!

REPLY
Katherine, Alumni Mentor | @katemn | May 4, 2016

Tutti, re: “administered through a pic line. Has anyone taken a drug this way for their mycobacterium abscessus?”

The FIRST thing I would ask the doctor is WHERE IS YOUR mycobacterium abscessus LOCATED!! When I was googling mycobacterium abscessus .. I didn’t realize it could be in MORE places than the lungs! It can be caused by dental work etc .. I had no idea. SO .. if it is in your lungs .. it would make sense to me to INHALE it by a nebulizer DIRECTLY INTO YOUR LUNGS!! A pic line would get it into YOUR blood stream is my understanding!

So do you due diligence and find out WHERE YOUR mycobacterium abscessus IS .. it is YOUR body!! No body cares about it more than you do! IF it IS in your lungs .. personally I would get my fanny to a SECOND OPINION Infectious Disease Pulmonologist! Just my opinion.

+++++++++++++++++++++++++++++++++++++++
Tutti, being a former accountant I researched like crazy prior to taking any of the meds .. I just looked through my notes on Amikacin .. found the following .. do with it what you will .. it is ONLY ONE PERSON’S EXPERIENCE AND OPINION .. I just took note of it and put it into my personal notes and am sharing it with you .. it DOES NOT MEAN IT WOULD HAPPEN TO YOU! But personally I would prefer to the hassle of inhaling the Amikacin to a pic line .. just me. (google Pic Line Infection Risks .. interesting)

I saw that some people had been on amikacin to treat this also, has anyone else experienced hearing loss with amikacin? I have lost my hearing due to it, and now have a cochlear implant. I have to say that is one of the harder things that i’ve had to deal with so I am always looking for others who may have experienced the same thing! .. I used IV amikacin for about 6 months and then switched to inhaled amikacin. The hearing loss did not get worse. I was told that inhaled amikacin doesn’t go to your blood directly and that’s why it would not affect the hearing loss like the IV does)

REPLY
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