1. < MAC & Bronchiectasis

MAI drug resistant??

Posted by becky33 @becky33, Jul 25, 2017

After 7 full month's of taking the big 3 my monthly sputum tests have come back positive again. Dr Anderson at Washington University in St. Louis is going to test me for being resistant to the big 3. What will happen if I am drug resistant? Anyone have that experience? I was diagnosed with MAI Jan 2017 and started the drugs on 1-20-17. Went to Dr. Joseph Craft my cardiologist for routine check up and he thought it was very strange because I was the 3rd MAI patient he'd seen in 6 mo's in the St. Louis, Mo. area. Dr Craft said we were all female, white, and in our mid 70's. Any of you from the St. Louis area that go to Dr. Craft? So upset over not being able to get a negative sputum culture after 7 mo's. Need some encouragement???

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 26, 2017

Good question to ask, Becky. I'm tagging @windwalker @tdrell @Paula_MAC2007 @lindam272 @irene5 @ling123 and @heathert to offer their suggestions and encouragement.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 26, 2017

Becky, Please do not get discouraged yet about your tests coming back positive still. You are only 7 months into your treatment; most treatments take a minimum of one year and up to 18 months. May I ask what three meds they have put you on? - Terri

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heathert | @heathert | Jul 26, 2017

@becky33 My MAI took a year of the big 3, then still tested positive for MAC so then I went onto inhaled Amakacin, and was negitive in the first month of taking it, Amakacin goes straight to the lungs which is much more successful maby you could discuss Amakacin inhaled with your doctor after a year of the big 3. Let us know how you get on.

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5 replies
Paula_MAC-2007 | @Paula_MAC2007 | Jul 26, 2017

@becky33 - 7 months is not a very long time on the 3 drugs -- some determinants for how long it may take to improve are:
1) the extent of your NTM/MAI in your lungs. How disbursed is the disease - one lung or both? What are the extent of your symptoms and how debilitating is the disease?
2) are you taking the 3 drugs every day, or 3 days a week?
3) are the drugs prescribed in the correct dosage -- based on height and weight. A 110 lb person would probably have a different dosage than a 150 lb person.
3) besides the drugs, what else are you doing to help your lung condition -- lifestyle changes such as exercise to improve lung function, rest, etc.
As @windwalker mentioned, most treatments take a minimum of 12-18 months to show improvement. The expectations of improvement after 6 months is very bold, I think.

That said, my situation is different from most here. I was on the 3 drugs for 9 years. Thankfully, the drugs eliminated my symptoms (I was quite ill and had a very demanding work schedule for years), stabilized my health, but caused other side-effects which came and went. After 4 years, I tried to go off and within 3-4 months got quite ill again. I then took the drugs for 3 days/week instead of each day.

I have found, along with the 3 meds and vision screening, it is important to consider these:
1) check your Vitamin D level - mine was at about 4-5 and very deficient; Vitamin D is somehow associated with lung function and NTM. I take prescription Vitamin D.
2) get plenty of rest ... even if you can't sleep, at least rest.
3) EXERCISE ... anything you can do to increase your lung function. My pulmonologist hit me with this 'exercise thingy' upon diagnosis. Pilates, Yoga, Walking every other day, aerobics (if you can do it), etc etc. These DO help quite a bit!

NTM/MAC/MAI is a tricky disease . . . it moves around in our lungs, can decrease in one area and pop up someplace else. Best wishes to you.

REPLY
1 reply
lindam272 | @lindam272 | Jul 26, 2017

Becky, MAC and MAI are very difficult to get under control. My doc told me that it would take approx. 14 months of the Big 3 daily. If you are resistant to those drugs, there are others that seem to be effective. I'll be having that conversation with my doc when I go back next month. Keep us posted and don't worry! Linda

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 27, 2017
In reply to @Paula_MAC2007 "@becky33 - 7 months is not a very long time on the 3 drugs -- some..." + (show)
@Paula_MAC2007

@becky33 - 7 months is not a very long time on the 3 drugs -- some determinants for how long it may take to improve are:
1) the extent of your NTM/MAI in your lungs. How disbursed is the disease - one lung or both? What are the extent of your symptoms and how debilitating is the disease?
2) are you taking the 3 drugs every day, or 3 days a week?
3) are the drugs prescribed in the correct dosage -- based on height and weight. A 110 lb person would probably have a different dosage than a 150 lb person.
3) besides the drugs, what else are you doing to help your lung condition -- lifestyle changes such as exercise to improve lung function, rest, etc.
As @windwalker mentioned, most treatments take a minimum of 12-18 months to show improvement. The expectations of improvement after 6 months is very bold, I think.

That said, my situation is different from most here. I was on the 3 drugs for 9 years. Thankfully, the drugs eliminated my symptoms (I was quite ill and had a very demanding work schedule for years), stabilized my health, but caused other side-effects which came and went. After 4 years, I tried to go off and within 3-4 months got quite ill again. I then took the drugs for 3 days/week instead of each day.

I have found, along with the 3 meds and vision screening, it is important to consider these:
1) check your Vitamin D level - mine was at about 4-5 and very deficient; Vitamin D is somehow associated with lung function and NTM. I take prescription Vitamin D.
2) get plenty of rest ... even if you can't sleep, at least rest.
3) EXERCISE ... anything you can do to increase your lung function. My pulmonologist hit me with this 'exercise thingy' upon diagnosis. Pilates, Yoga, Walking every other day, aerobics (if you can do it), etc etc. These DO help quite a bit!

NTM/MAC/MAI is a tricky disease . . . it moves around in our lungs, can decrease in one area and pop up someplace else. Best wishes to you.

Jump to this post

Wow, Paula! Nine years on antibiotics!!! I am on year four myself. I really want to be off of them. I have a unique situation though and was told that I may have to on them forever. I am having a hard time with that. I am not on the big three, just two meds that get alternated every month.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 27, 2017
In reply to @heathert "@becky33 My MAI took a year of the big 3, then still tested positive for MAC..." + (show)
@heathert

@becky33 My MAI took a year of the big 3, then still tested positive for MAC so then I went onto inhaled Amakacin, and was negitive in the first month of taking it, Amakacin goes straight to the lungs which is much more successful maby you could discuss Amakacin inhaled with your doctor after a year of the big 3. Let us know how you get on.

Jump to this post

Hello Heather, did you ever ask your doctor if it were possible to have been put on the inhaled Amakacin at the start instead of the big three? Would it have worked back then?

REPLY
heathert | @heathert | Jul 27, 2017
In reply to @heathert "@becky33 My MAI took a year of the big 3, then still tested positive for MAC..." + (show)
@heathert

@becky33 My MAI took a year of the big 3, then still tested positive for MAC so then I went onto inhaled Amakacin, and was negitive in the first month of taking it, Amakacin goes straight to the lungs which is much more successful maby you could discuss Amakacin inhaled with your doctor after a year of the big 3. Let us know how you get on.

Jump to this post

@windwalker quite possibly but it probably would have been the big 3 and Amakacin as NJH advise. Its all a case of trial and error, I am quite concerned about going off all the treatments tho, would like to stay on them. See my doc today so will discuss it all then.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 27, 2017
In reply to @heathert "@becky33 My MAI took a year of the big 3, then still tested positive for MAC..." + (show)
@heathert

@becky33 My MAI took a year of the big 3, then still tested positive for MAC so then I went onto inhaled Amakacin, and was negitive in the first month of taking it, Amakacin goes straight to the lungs which is much more successful maby you could discuss Amakacin inhaled with your doctor after a year of the big 3. Let us know how you get on.

Jump to this post

Hi Heather, I would be interested in what your doctor had to say today. I hear you about being afraid to go off of the meds. My doctor said I could now do two weeks of tobramycin instead of the 28 days I was on. I did it, but was admittedly apprehensive..

REPLY
heathert | @heathert | Jul 27, 2017
In reply to @heathert "@becky33 My MAI took a year of the big 3, then still tested positive for MAC..." + (show)
@heathert

@becky33 My MAI took a year of the big 3, then still tested positive for MAC so then I went onto inhaled Amakacin, and was negitive in the first month of taking it, Amakacin goes straight to the lungs which is much more successful maby you could discuss Amakacin inhaled with your doctor after a year of the big 3. Let us know how you get on.

Jump to this post

@windwalker Hi Terri, my doc said that my cavities(3) have closed but have left a small scar, my origional nodules have disapppeared but a few new have appeared, she said that people get nodules which come and go without MAC. My sputum from the bronch was negitive for MAC. My scaring/bronchiecatasis is very mild. I have remained on the big 3 as it has taken me along time to clear the MAC(around 2.5 years).

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