1. < MAC & Bronchiectasis

Treatment Option

Posted by cowgirlmt @cowgirlmt, Nov 3, 2017

I recently was diagnosed with MAI in late August 2017.. This all started in May when I was admitted to the hospital for pneumonia. They found a spot on my lung, and I had to have a lung biopsy done in July. My pulmonologist put me on the Big 3(Clarithromycin, Ethambutol, Rifampin). I could not tolerate any of those medications so they had me stop all medications and referred me to an Infectious Disease doctor. Around 3 weeks ago infectious disease Dr. started me on Zithromax 500mg Daily. I have not noticed a change in my symptoms, and I am having more severe pains. I just turned 27 this month, and I am just disheartened because nothing seems to be helping. I had a flare up yesterday, and was put in observation. The only thing they tell me is to take pain medication, and may have to start me on nerve medicine. This is not something that I want. I have never taking medications in my life, and now all I do is try this medication or that..
I am just curious if anyone else have had similar issues.. I am just trying to find answers, thank you for taking the time for reading this.

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

ling123 | @ling123 | Nov 14, 2017

I had my first CT scan 3 years ago when I was first diagnosed with MAC. My second CT scan was last month. I had quite a number of chest X-rays in between. I have never been treated with antibiotics for MAC during these 3 years. I was given the option but decided not to and my pulmonary doctor agreed. The last CT scan and chest X-rays before that have not shown worsening of my lungs. In fact the last CT scan showed a slight improvement from 3 years ago. I don't have any breathing problems or fatigue. So still no drugs yet. I keep my fingers crossed I won't have to resort to them for the foreseeable future.

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unicorn | @unicorn | Nov 14, 2017
In reply to @dmarks "Sometimes it is confusing to treat or not to treat. If the infection is present, but..." + (show)
@dmarks

Sometimes it is confusing to treat or not to treat. If the infection is present, but not growing...sometimes you can monitor yourself with CT scans....I have MAC and am treated at national jewish hospital in denver. I have an infectious disease Dr. there and am currently back on meds due to growth of the disease evidenced by a CT scan. Always get the opinion of an infectious disease Dr. Let me know if I can help..

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Hi Jkie: I took the big 3 for 2 years, on and off for 3. at first, just bad taste in mouth, tiredness, and nausea, which went away if I ate something. So it was pretty tolerable. But later on, it would start to hit my bowels, with hard core cramps. Also my vision got a lot worse and I got a wierd rash on my stomach. My heart beat harder. The reason I had to finally go off of them was because of the horrible cramping, loose bowels and too much weight loss.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 14, 2017
In reply to @dmarks "I have MAC as well and was treated with the big three and could not tolerate..." + (show)
@dmarks

I have MAC as well and was treated with the big three and could not tolerate ethambutol so my dr. put me on Azithromycin, Rifampin, and inhaled Amikacin. This was effective and got me into remission yet I again tested positive soon after. One drug cannot treat MAC and to put you on that may cause you to become drug resistant. I would find another Dr.

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@cowgirlmt, It is good to have a good support system. The love of family can help a lot too.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 14, 2017
In reply to @dmarks "Sometimes it is confusing to treat or not to treat. If the infection is present, but..." + (show)
@dmarks

Sometimes it is confusing to treat or not to treat. If the infection is present, but not growing...sometimes you can monitor yourself with CT scans....I have MAC and am treated at national jewish hospital in denver. I have an infectious disease Dr. there and am currently back on meds due to growth of the disease evidenced by a CT scan. Always get the opinion of an infectious disease Dr. Let me know if I can help..

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@jkiemen , Jo Ann, here are some guidelines for when you are put on the BIG 3: From Katherine's File Cabinet:
TESTING-baseline and periodic 1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin - CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY

OR TESTING:
BASELINE: HEARING AND VISION (Vision: Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES
QUARTERLY: HEARING and VISION
NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

**** Lab tests:
CBC- Complete Blood Count (CBC)
ALT- Alanine Aminotransferase (ALT) LIVER
alk phosphatase- Alkaline Phosphatase - LIVER
serum creatinine-. Creatinine and Creatinine Clearance-SERUM CREATININE - KIDNEY

TESTING RECOMMENDED FOR VITAMIN LEVELS 1. Ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD) *From our member @tdrell Terri, my Primary Dr at NJH

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 14, 2017
In reply to @dmarks "I have MAC as well and was treated with the big three and could not tolerate..." + (show)
@dmarks

I have MAC as well and was treated with the big three and could not tolerate ethambutol so my dr. put me on Azithromycin, Rifampin, and inhaled Amikacin. This was effective and got me into remission yet I again tested positive soon after. One drug cannot treat MAC and to put you on that may cause you to become drug resistant. I would find another Dr.

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@cowgirlmt, Dear Kimmy, here are a few links that you might find interesting and helpful. https://www.nationaljewish.org/ntmvideos

https://www.youtube.com/watch?v=U1ZmJAQlgLwhttps://www.youtube.com/watch?v=YeomndWSom8
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Jen_b | @jenblalock | Nov 15, 2017
In reply to @sophie1019 "Hi I was diagnosed with MAC. I am on rifampin, azthromycin and moxifloxcin. Plus I have..." + (show)
@sophie1019

Hi I was diagnosed with MAC. I am on rifampin, azthromycin and moxifloxcin. Plus I have a pic line inserted..I feel good, but want to come off some of these meds.

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@dmarks I took Clofazamine for about a year and the only side effects I noticed was that I had a nice tan (not the horrid purple skin you read about when you Google side effects) and also dry skin and dry eyes. I have been off MAC drugs since April 2017 with no residual side effects. I am one with cavitary lesions who decided against the surgery. I am well now and can always revisit it later if necessary.

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Jo Ann K | @jkiemen | Nov 15, 2017
In reply to @dmarks "Sometimes it is confusing to treat or not to treat. If the infection is present, but..." + (show)
@dmarks

Sometimes it is confusing to treat or not to treat. If the infection is present, but not growing...sometimes you can monitor yourself with CT scans....I have MAC and am treated at national jewish hospital in denver. I have an infectious disease Dr. there and am currently back on meds due to growth of the disease evidenced by a CT scan. Always get the opinion of an infectious disease Dr. Let me know if I can help..

Jump to this post

Any guidelines to prevent nausea/diarrhea other than taking with food? like spacing them apart be several hours etc.

REPLY
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