Thoughts about “the watch and wait” approach.

Posted by jackijaffe @jackijaffe, Dec 13, 2023

Hello, I have been recently diagnosed with MAI and Bronchiectasis. My doctor does not recommend doing any treatment unless I start to get bad symptoms. He is suggesting “watch and wait”. Im not sure if this is what i should be doing. He tells me the treatment is very difficult for most people. I would appreciate any advice? Thank you

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He is correct. Unless, you have a full-blown infection, daily maintenance is the key, I've found. Lung clearance, healthy lifesytle, plenty of rest and low stress has been working very well for me. God bless

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I agree to watch and wait. I made the mistake of listening to my first respirologist who, I’m sure, had never had a patient with MAC before me. I naively followed his recommendation for taking the Big 3 when I should have watched and waited. I took the meds for 6 months before I got side effects and my bacteria load was higher after 6 months than it was when I started. I found a new respirologist and have been diligently doing airway clearance for over 4 years, with Mac better controlled than it was on the meds.

I’m not saying that medication is not the way to go for everyone but wait until you really need them (and with, any luck, until some of the drugs currently in development are available.

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Other factors are your weight (loss?), blood tests (cbc, cmp), PFT results and of course cough frequency.
If you don't trust this Dr by all means get a second opinion, maybe an ID which is actually a nice addition to having a pulminologist

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@kathyhg

I agree to watch and wait. I made the mistake of listening to my first respirologist who, I’m sure, had never had a patient with MAC before me. I naively followed his recommendation for taking the Big 3 when I should have watched and waited. I took the meds for 6 months before I got side effects and my bacteria load was higher after 6 months than it was when I started. I found a new respirologist and have been diligently doing airway clearance for over 4 years, with Mac better controlled than it was on the meds.

I’m not saying that medication is not the way to go for everyone but wait until you really need them (and with, any luck, until some of the drugs currently in development are available.

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This is interesting to us as my wife is newly diagnosed.
No infection currently but coughing and mucus every hour except for a 2-3hr stretch in the early morning.
She has not yet received any lung clearance instructions and her Mayo pulmonologist isn't scheduled to be available for an appointment for 6-8 weeks. We'd like to not wait if lung clearance can help in the meantime. Thanks for any suggestions.

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I agree with watch and wait, if symptoms are not presenting a health danger. I have bronchiectasis and was diagnosed with MAC a few years ago. I am doing fine with 7% hypertonic saline nebulizing, compression vesting, regular exercise, positive thinking and eating a mostly plant based/Mediterranean diet. I also am cognizant of the power gratitude has in maintaining one's mental and spiritual health.

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Do you have nodules and escerbations? There are certain criteria for tx with meds. I'm in watchful waiting too, with mycrobacterium lentiflavin.

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I was diagnosed with MAC a year ago along with H-influlenza. Treatment for H-flu relieved my fatigue and greatly reduced my cough and congestion. When I was reluctant to start the Big 3, after watching videos and reading of experiences on this and other support networks, my pulmonologist referred me to Dr. Winthrop at OHSU. Dr. Winthrop concurred that treatment would likely be needed, but offered the option of being on a drug trial for six months. I chose to do that and started in July on either clofazamine or placebo. I send sputum samples every other week and have an ECG once a month, saw him at the beginning and half-way point for bloodwork and other testing. All will be repeated at the end in January along with a CT scan which will reveal how well my lungs are doing.
I figured I couldn't get more careful "watching" than that. I nebulize 7% saline 2 x daily, use the Aerobika and walk almost every day. Neither he nor I know whether I'm on the drug or placebo. I was thinking placebo since I've noticed no side effects, but apparently my ECG does show an effect that has Dr. Winthrop convinced I'm on the real drug. He doesn't get the results of the sputum samples and will have to do his own and at the end of the trial. That and the CT scan in January will determine what options are open next, but though my sputum still shows bits of green, my cough and congestion are definitely improved.
Either way, I feel good about contributing to the research, and, with any luck, vigilant airway clearance and exercise will be enough to keep my MAC and bronchiectasis from doing more damage. Thats my 2-cents on watching and waiting. Wish me luck in January!
Anna

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@equanimous

I agree with watch and wait, if symptoms are not presenting a health danger. I have bronchiectasis and was diagnosed with MAC a few years ago. I am doing fine with 7% hypertonic saline nebulizing, compression vesting, regular exercise, positive thinking and eating a mostly plant based/Mediterranean diet. I also am cognizant of the power gratitude has in maintaining one's mental and spiritual health.

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Thank you for sharing, at this point in her journey all this is very helpful.

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@laurasn

He is correct. Unless, you have a full-blown infection, daily maintenance is the key, I've found. Lung clearance, healthy lifesytle, plenty of rest and low stress has been working very well for me. God bless

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😊 thank you

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@kathyhg

I agree to watch and wait. I made the mistake of listening to my first respirologist who, I’m sure, had never had a patient with MAC before me. I naively followed his recommendation for taking the Big 3 when I should have watched and waited. I took the meds for 6 months before I got side effects and my bacteria load was higher after 6 months than it was when I started. I found a new respirologist and have been diligently doing airway clearance for over 4 years, with Mac better controlled than it was on the meds.

I’m not saying that medication is not the way to go for everyone but wait until you really need them (and with, any luck, until some of the drugs currently in development are available.

Jump to this post

Thank you😊 and good luck to you.

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