Is there any successful story ?

Posted by helen1000 @helen1000, 2 days ago

My pulmonologist says MAC is rarely cured. But I was also told that less than 30% patients can be fully cured without any reinfection, relapse or recurrence. Is there any success story that someone can successfully manage MAC without recurrence or relapse by AWC over 5 years, 10 years or 20 years? And also without any other lung infection like other bacteria or fungus?

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@laureltn

I think when you're first diagnosed, the enormity of NTM infection and bronchiectasis can be overwhelming and it's normal to want reassurance that you'll get truly "cured." There are people in my support group who have gone over five years without reinfection. There's also people who, although they have diffuse bronchiectasis in both lungs, never get an NTM.

The new drugs coming on the horizon and in trials are potential gamechangers. Brensocatib should be released before year's end. Arina-1 will hopefully see phase 2 trials in non-CF bronchiectasis patients. Arikayce has helped many people convert who were unable to before. If your doctor hasn't tested you for CF gene mutation and Alpha 1 deficiency, that information could be really important, along with ruling out GERD.

I was totally asymptomatic at diagnosis, and for a while I had wished I hadn't found out (incidental finding on a chest CT). But after the shock wore off, I realized knowledge is power, and knowing the things that could potentially cause NTM infections and how to avoid them is huge. I've made it my goal to be as proactive in educating myself and making good decisions in the balance of daily life.

Because I am an overachiever at most things, I had to treat MAC twice. We'll never know if it was an indolent original infection or a reinfection (which is quite possible because I was hiking 1100 miles on the Appalachian Trail when I finished the Big 3 the first time). I am clear now, and it's been 8 months since I finished medications. Every month is another small victory for me! I don't think we can ever let our guard down, but we can live full, productive, happy lives.

Best of luck!

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@laureltn, thanks so much for your long message. I realize that NTM is not curable, like high blood pressure or diabetes, it is chronic disease. I agree with everything you said - prevention is the key. But high daily maintenance is the best strategy to control it and co-exist with it.
It is so admiring that you hold such a positive and active philosophy - seems Appalachian Trail is so amazing! You must enjoy it a lot and I wish you continue this amazing activity! And I wish you can stay free for a much longer time after your second treatment. In my experience, exercise is necessary but balance may work better. I started jogging in Jan 2022 and by April I can run 10K a day ,but in June my NTM was developed. Of course that is my personal experience.
The mystery for me is I went to NJH for all tests and except silent Gerd, all other tests are negative. My immune is also normal. So I always hope there is a cure for me, but the doctor also confirmed even with surgery, it is not a 100% guarantee.
I will hold a realistic expectation and perform daily maintenance. The great thing for NB patients is that some of them are good for 10 years after 1st treatment.

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@helen1000

@laureltn, thanks so much for your long message. I realize that NTM is not curable, like high blood pressure or diabetes, it is chronic disease. I agree with everything you said - prevention is the key. But high daily maintenance is the best strategy to control it and co-exist with it.
It is so admiring that you hold such a positive and active philosophy - seems Appalachian Trail is so amazing! You must enjoy it a lot and I wish you continue this amazing activity! And I wish you can stay free for a much longer time after your second treatment. In my experience, exercise is necessary but balance may work better. I started jogging in Jan 2022 and by April I can run 10K a day ,but in June my NTM was developed. Of course that is my personal experience.
The mystery for me is I went to NJH for all tests and except silent Gerd, all other tests are negative. My immune is also normal. So I always hope there is a cure for me, but the doctor also confirmed even with surgery, it is not a 100% guarantee.
I will hold a realistic expectation and perform daily maintenance. The great thing for NB patients is that some of them are good for 10 years after 1st treatment.

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It's good you went to NJH. I was seen by Dr. Kasperbauer in 2020, but she released me back to Vanderbilt because she said I was well on the way to being cured. Both my doctors thought I'd be a "one and done" because of my overall fitness, health, etc. I'm not immunocompromised either, unless you count the decline that comes with menopause and aging. We finished the AT in September of 2022. I may be the first BE/NTM patient to finish the whole thing, with at least 600 miles while on the Big 3. 🙂

Even though my treatment followed all the protocols, it's possible the MAC was still there, just dormant. I was developing resistance the second time around, so we dropped rifampin and added Arikayce and that did it. One day at a time!

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HI Laureltn, I wish I had great energy like you, even with Big 3! That is all we need, isn't it? I also saw Dr. Kasperbauer in NJH!! I will switch to Arikayce this year ( after six month, the insurance company will approve it) and hopefully it can help me!! Same as you, I think my MAC was developed when I was approaching menopause period. My lung was clear in 2018 with an X-RAY. The hormone level really counts a lot!

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@helen1000

You did really really well! Do you have MAC or just BE? Seems great care, exercise, family support and even work are the key!! I give you the best prayer and wish you continue doing great!

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Just bronchiectasis. I asked my doctors why they did not tell me to exercise many years ago, and they told me they stopped doing it generally because no one listened. I always exercised, so it was not an issue for me. I never stopped— even when not feeling great I force myself on the bike (stationary or road or gravel) at least 4x/wk. Thanks for the prayers. Good luck to you too.

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@spectrumcyclist

Just bronchiectasis. I asked my doctors why they did not tell me to exercise many years ago, and they told me they stopped doing it generally because no one listened. I always exercised, so it was not an issue for me. I never stopped— even when not feeling great I force myself on the bike (stationary or road or gravel) at least 4x/wk. Thanks for the prayers. Good luck to you too.

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That is great for you ! But marathon runners also get MAC. It may happen to anyone. You can find immune normal people with it, young boys with it, children with it, anyone! That is why I say it is an opportunitic disease.

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