1. < MAC & Bronchiectasis

How often do you have sputum tested after negative for mycrobacteria ?

Posted by rbl @rbl, Mar 18 5:00pm

I had a negative sputum culture in July and since October I am being tested every month. So far my Nov., Jan. and Feb. are still okay, I'm just scared of the results each time.... I'm not off antibiotics yet, hoping for May or June, fingers crossed. I'm wondering if it normal to be tested monthly or is this excessive? Going forward, what do I expect as far as sputum testing?

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Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 18 6:14pm

Stopped antibiotics in December 2019. I was tested twice the first year, once the next. Then we went to annual CT. After 2 with "no change" my pulmonologist declared me "Stable". She said we will repeat cultures and/or CT only if I become symptomatic. She retires this year and is "handing me off" to someone new in September - also a Bronch/MAC specialist, so we'll see what the new doc has to say.
I continue daily airway clearance, 2-3 times per week 7% saline (both increased if I get an exacerbation) and am feeling fine.
Sue

REPLY
2 replies
jml6812 | @jml6812 | Mar 19 7:51am
In reply to @sueinmn "Stopped antibiotics in December 2019. I was tested twice the first year, once the next. Then..." + (show)
@sueinmn

Stopped antibiotics in December 2019. I was tested twice the first year, once the next. Then we went to annual CT. After 2 with "no change" my pulmonologist declared me "Stable". She said we will repeat cultures and/or CT only if I become symptomatic. She retires this year and is "handing me off" to someone new in September - also a Bronch/MAC specialist, so we'll see what the new doc has to say.
I continue daily airway clearance, 2-3 times per week 7% saline (both increased if I get an exacerbation) and am feeling fine.
Sue

Jump to this post

It's so inspiring to hear your story. Gives me hope. Who is your new doctor? Is he/she with Park Nicollet?

REPLY
1 reply
blm1007blm1007 | @blm1007blm1007 | Mar 19 8:10am
In reply to @sueinmn "Stopped antibiotics in December 2019. I was tested twice the first year, once the next. Then..." + (show)
@sueinmn

Stopped antibiotics in December 2019. I was tested twice the first year, once the next. Then we went to annual CT. After 2 with "no change" my pulmonologist declared me "Stable". She said we will repeat cultures and/or CT only if I become symptomatic. She retires this year and is "handing me off" to someone new in September - also a Bronch/MAC specialist, so we'll see what the new doc has to say.
I continue daily airway clearance, 2-3 times per week 7% saline (both increased if I get an exacerbation) and am feeling fine.
Sue

Jump to this post

Hi Sue- Those are words I have heard several times this year regarding the highly recommended doctors, "retiring." Wishing you a good transition during and after the "hand off".
In the meantime allow me to repeat, we appreciate all you have learned, shared, hope you stay well and have the time/engergy to continue with what you do for all on Mayo Connect. Thanks.

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annagh | @annagh | Mar 19 11:43am

Perhaps this should be a whole new topic, but does seem relevant to the frequency of sputum tests question. A new study, published in the American Thoracic Society Journal, shows promising results for a blood test that can detect MAC in two hours! More studies needed before it will be available to us, but wouldn't this be helpful?
Anna
Serum Cell-free DNA-based Detection of Mycobacterium Avium Complex Infection
https://www.atsjournals.org/doi/abs/10.1164/rccm.202303-0401OC

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Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 19 12:57pm
In reply to @jml6812 "It's so inspiring to hear your story. Gives me hope. Who is your new doctor? Is..." + (show)
@jml6812

It's so inspiring to hear your story. Gives me hope. Who is your new doctor? Is he/she with Park Nicollet?

Jump to this post

@jml6812 My new doctor will be with either Health Partners or Hennepin Health - I won't know until they call me to schedule.
I have two kids in healthy care, so they will tell me if the referral is a good one.

@blm1007blm1007 - Yes, my primary retired at the end of 2022, and it took 3 tries to hit the right new one. My pulmonologist retires this year and is sending me on. My long-time ophthalmologist already stopped doing surgery and told me she will retire in 2025. She has already referred me to a new doc for cataract surgery & another to monitor my glaucoma into the future - I will meet them in May. I just have my fingers crossed that my revered ortho will be working a few more years, as my revised hips are approaching 15 years old and my aging knees are complaining...

But in all honesty, I don't begrudge anyone the right to retire and enjoy life - I certainly did as soon as it was financially wise.
Sue

REPLY
1 reply
formergardener | @formergardener | Mar 20 6:49am

It seems that doctors can vary on the matter of frequency of sputum testing and even preferred length of treatment after negative.

I have been sputum negative since November, thanks to the addition of Arikayce, and my doctor wants me negative for 18 month before stopping treatment. She finds that patients who extend treatment past a year after being sputum negative remain sputum negative longer. Is it because the longer treatment ensures that the infection is more completely irradiated? I am hoping that I can continue to tolerate the combo of Azithromycin, ethambutol, and nebulized Arikayce for another 13 months!

REPLY
1 reply
jml6812 | @jml6812 | Mar 20 8:47am
In reply to @sueinmn "@jml6812 My new doctor will be with either Health Partners or Hennepin Health - I won't..." + (show)
@sueinmn

@jml6812 My new doctor will be with either Health Partners or Hennepin Health - I won't know until they call me to schedule.
I have two kids in healthy care, so they will tell me if the referral is a good one.

@blm1007blm1007 - Yes, my primary retired at the end of 2022, and it took 3 tries to hit the right new one. My pulmonologist retires this year and is sending me on. My long-time ophthalmologist already stopped doing surgery and told me she will retire in 2025. She has already referred me to a new doc for cataract surgery & another to monitor my glaucoma into the future - I will meet them in May. I just have my fingers crossed that my revered ortho will be working a few more years, as my revised hips are approaching 15 years old and my aging knees are complaining...

But in all honesty, I don't begrudge anyone the right to retire and enjoy life - I certainly did as soon as it was financially wise.
Sue

Jump to this post

I'll be interested to hear if you are happy with the new pulmonologist. Both Health Partners and Hennepin Health are in my network. Thanks for your help!

REPLY
Rick | @rstel7272 | Mar 21 9:15am
In reply to @formergardener "It seems that doctors can vary on the matter of frequency of sputum testing and even..." + (show)
@formergardener

It seems that doctors can vary on the matter of frequency of sputum testing and even preferred length of treatment after negative.

I have been sputum negative since November, thanks to the addition of Arikayce, and my doctor wants me negative for 18 month before stopping treatment. She finds that patients who extend treatment past a year after being sputum negative remain sputum negative longer. Is it because the longer treatment ensures that the infection is more completely irradiated? I am hoping that I can continue to tolerate the combo of Azithromycin, ethambutol, and nebulized Arikayce for another 13 months!

Jump to this post

12 months is usually the minimum. I 28 months the first go round. 12 more on a second.
They will look for radiological clearance also.

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