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Update On Treatment of MAC

Posted by Terri Martin, Volunteer Mentor @windwalker, Jun 22, 2017

Hello All! I had a vist to the Mayo this past Tues. I was first diagnosed with MAC in 2005. I refused the three drug standard treatment. Several weeks on antibiotics knocked it out. It came back in 2013, was treated with one antibiotic for 10 days a month on a monthly basis. It cleared up. Then in 2016, had pseudomonas infection. It was treated with bi-monthly tobramysin & cipro. It too cleared up.I asked my Dr why in the four yrs I have been going to the Mayo; that he never put me on the BIG THREE antibiotics. His reply, and I quote with his permission: The BIG THREE treatment is 'old school' and it is OVER-TREATING most patients. He said he gets new patients in seeking second opinions and that he takes no less than three people a week OFF of the BIG THREE. I asked what he prescribes instead. He said it varies depending on colony size, specie, patient history, etc. He stated that most drs prescribe the BIG THREE because it was the norm years ago, and they honestly do not know much about the disease. He only uses the BIG THREE when a patient does not respond to single antibiotic treatments, or is SEVERE and CHRONIC. I would guess Katherine may fall into that catagory. He also said that he sometimes doesn't recommend treatment at all because 90% of the time, the MAC clears up on it's own. That may be why someone recently posted she was confused as to why her dr did not want to treat it yet and wait and see. I found this info VERY interesting.

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

dulwich | @dulwich | Dec 17, 2021

Yes, the first two months were bad including greatly increased cough and sputum but doing better now at 4 months although still increased sputum- a strange pink- orange color
Has anyone else had that?
Also I had to cut way back on airway clearance for first two months but now able to tolerate 7% saline again
Hang in there- you might start to adjust to it

REPLY
2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Dec 18, 2021
In reply to @dulwich "Yes, the first two months were bad including greatly increased cough and sputum but doing better..." + (show)
@dulwich

Yes, the first two months were bad including greatly increased cough and sputum but doing better now at 4 months although still increased sputum- a strange pink- orange color
Has anyone else had that?
Also I had to cut way back on airway clearance for first two months but now able to tolerate 7% saline again
Hang in there- you might start to adjust to it

Jump to this post

Hi, I had the increased cough on the antibiotics, it was my body trying to clear out the infected mucus that was accumulated, but have not seen the colored mucus, other than occasionally blood-tinged.
Have you asked your doctor about it? What do they say?
Sue

REPLY
Brenda R. | @brigby | Dec 19, 2021
In reply to @dulwich "Yes, the first two months were bad including greatly increased cough and sputum but doing better..." + (show)
@dulwich

Yes, the first two months were bad including greatly increased cough and sputum but doing better now at 4 months although still increased sputum- a strange pink- orange color
Has anyone else had that?
Also I had to cut way back on airway clearance for first two months but now able to tolerate 7% saline again
Hang in there- you might start to adjust to it

Jump to this post

@dulwich Hi there, yes, I have had that pinkish-orangish sputum at times in the past. I Always know something’s up!

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1 reply
lora jo | @ljfoo | Dec 19, 2021
In reply to @dulwich "Miriam If you are having physical symptoms from the MAC, it is most likely time for..." + (show)
@dulwich

Miriam
If you are having physical symptoms from the MAC, it is most likely time for treatment. The doctors have to tell you all the scary stuff about treatment and you may be more likely to hear from the people who have had problems with the medications. I have been on treatment for over two years and it has not been easy- some side effects, lots of doctor visits, labs and general inconvenience but it has not stopped me from functioning and living normally. I suspect your symptoms would improve with treatment and you could even be one of the lucky ones with a good response and few side effects.

You and others might be interested in a recent article which suggested that the time it took for cultures to grow MAC was correlated with the bacterial load in the lungs and thus the need for treatment

https://www.atsjournals.org/doi/abs/10.1513/AnnalsATS.202107-765OC

Their cut off was 10 days - shorter times predicted need for treatment. e.g. I was at 4 days when I started treatment and now much longer or negative. If you have this information about your cultures, it would be another piece of data to consider

Good luck and make sure that if you start treatment you start one medication at a time to let your body adjust and to tell which is causing any side effects. Also, expect that the GI side effects and fatigue will be worst in the first month or two but often improve after that

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Do you have the PDF to this article:
https://www.atsjournals.org/doi/abs/10.1513/AnnalsATS.202107-765OC
It's behind a paywall. If you have the PDF, can you attach it so we can read it, Thank you.

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dulwich | @dulwich | Dec 20, 2021

Will try to do that but it is not straightforward, so might take a few days to sort out

REPLY
1 reply
dulwich | @dulwich | Dec 21, 2021
In reply to @dulwich "Will try to do that but it is not straightforward, so might take a few days..." + (show)
@dulwich

Will try to do that but it is not straightforward, so might take a few days to sort out

Jump to this post

let's see if this works!

Shared files

annalsats (annalsats.202107-765oc.pdf)

REPLY
1 reply
dulwich | @dulwich | Dec 21, 2021
In reply to @brigby "@dulwich Hi there, yes, I have had that pinkish-orangish sputum at times in the past. I..." + (show)
@brigby

@dulwich Hi there, yes, I have had that pinkish-orangish sputum at times in the past. I Always know something’s up!

Jump to this post

For me, it has been very associated with the Arikayce and doesn't seem to be associated with any increase in MAC or other infection, so I assume it is some reaction to irritation from the medication, rather than something to worry about. It is significantly less now than in the first couple of months

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lora jo | @ljfoo | Dec 22, 2021
In reply to @dulwich "let's see if this works!" + (show)
@dulwich

let's see if this works!

Jump to this post

It worked! I opened the file.
Thanks,
lora jo

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megk20 | @megk20 | Feb 9, 2022
In reply to @windwalker "@cld120 Keep trying to get an appt at Mayo. Ask to be put on their cancellation..." + (show)
@windwalker

@cld120 Keep trying to get an appt at Mayo. Ask to be put on their
cancellation list. Keep bugging them until they see you. An opening is bound to
open up. Or try another good institutution like Jewish National Health, Duke,
NIH, or others in Ca. if you can afford the travel. IBS is associated with auto
immune disease as is bronchiecstasis and MAC. Many of these disease go
hand-in-hand with co-morbidity. Meaning; they &apos;go together&apos;.
 

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I was just wondering if Mayo Clinic takes Medicare. I was there 16 years ago for back surgery and now also have MAC but heard that they do not take Medicare anymore. Is this true?

REPLY
1 reply
bee1950 | @bee1950 | Feb 10, 2022
In reply to @megk20 "I was just wondering if Mayo Clinic takes Medicare. I was there 16 years ago for..." + (show)
@megk20

I was just wondering if Mayo Clinic takes Medicare. I was there 16 years ago for back surgery and now also have MAC but heard that they do not take Medicare anymore. Is this true?

Jump to this post

Yes, Mayo takes Medicare!

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