Remission: When do you consider yourself in remission from MAC?

Posted by thumperguy @thumperguy, May 23, 2022

Okay, so let’s say you’ve been appointed to proclaim from on high how many days, weeks, months or years of being symptom free must come and go before you may, without fear of making a fool of yourself, declare yourself to be “cured”

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Thank u Thumper. I tried to do refinish my hardwood floors. Took a real bad mac attack. Got run down so bad. My lungs were filling. I got on the 7% three times a day and doubled up on my arithromycin. Today after7 days of felling like they better get the hole ready. I may make it for another bout of stupidity. I got up at 4am and did a round of saline. It is a life saver it really does. Again thanks. gm

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@fdixon63

I thought some would jump on this question. I'm not sure we're all the same but for me it darker sputum, feeling chilled without fever, fatigue and some loss of appetite. You need a sputum check for pseudomonas. You should hear results in just a few days. Hope this helps.

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Thank you. This is helpful!

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@thumperguy

Sue, “the best you might be willing to say” is well stated and certainly adequate.
It’s been several years since a flare up with fever. Discovery of 7% saline was a watershed event in the management of Mac/Bronch. I’m about ready to “test the limit” to discover how “infrequently” I can nebulize before causing a febrile exacerbation. Don

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Don't do it thumperguy! I didn't nebulize regularly for a while. The mucus built up and I coughed constantly until I started Nebulizing daily again. I coughed so much my stomach hurt!

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@nac1

Don't do it thumperguy! I didn't nebulize regularly for a while. The mucus built up and I coughed constantly until I started Nebulizing daily again. I coughed so much my stomach hurt!

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At risk of losing my ticket to ride here I’ll report not nebulizing for months and remaining concurrently symptom free. Go figure?

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@thumperguy

At risk of losing my ticket to ride here I’ll report not nebulizing for months and remaining concurrently symptom free. Go figure?

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Now that's living dangerously!

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Hello new to this page. I am not sure what your talking about an regards to 7% saline. Can you please advise as I have bronchiactis, hypersensitivity pneumunitis, Interstitial lung disease and now MAC. Does anyone have these diseases....Sorry but truly not sure of the saline if adding to the nebulizer?

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@helenrivera

Hello new to this page. I am not sure what your talking about an regards to 7% saline. Can you please advise as I have bronchiactis, hypersensitivity pneumunitis, Interstitial lung disease and now MAC. Does anyone have these diseases....Sorry but truly not sure of the saline if adding to the nebulizer?

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So, the short answer is that many of us use 7% saline solution in our nebulizers for 2 reasons...

First, it helps thin the mucus that plagues so many of us with lung diseases, so we can get it out more easily. That way the germs don't have such a nice warm, wet place to grow.

Second, research shows that the 7% saline suppresses the ability of MAC bacteria to grow. So those of us who quit antibiotics, either due to getting negative cultures or because we couldn't tolerate them, are less likely to get a bad infection again. Some people find 7% too harsh, and their doctors may prescribe 3% instead - helpful for clearing mucus, but maybe not as useful for suppressing MAC.

I have bronchiectasis, asthma, hyperreactive airway, and had MAC and pseudomonas. It was 4 years ago that I was diagnosed, and for the past 2 1/2 years I have stayed pretty healthy with 2 inhalers, nebbing saline, doing airway clearance, getting exercise & a good diet. I only wish I had more energy - some days it is hard to breathe, and I can no longer run with my little grandsons (but we find lots of other things to do!)

Are you taking antibiotics for MAC?
Sue

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@sueinmn

So, the short answer is that many of us use 7% saline solution in our nebulizers for 2 reasons...

First, it helps thin the mucus that plagues so many of us with lung diseases, so we can get it out more easily. That way the germs don't have such a nice warm, wet place to grow.

Second, research shows that the 7% saline suppresses the ability of MAC bacteria to grow. So those of us who quit antibiotics, either due to getting negative cultures or because we couldn't tolerate them, are less likely to get a bad infection again. Some people find 7% too harsh, and their doctors may prescribe 3% instead - helpful for clearing mucus, but maybe not as useful for suppressing MAC.

I have bronchiectasis, asthma, hyperreactive airway, and had MAC and pseudomonas. It was 4 years ago that I was diagnosed, and for the past 2 1/2 years I have stayed pretty healthy with 2 inhalers, nebbing saline, doing airway clearance, getting exercise & a good diet. I only wish I had more energy - some days it is hard to breathe, and I can no longer run with my little grandsons (but we find lots of other things to do!)

Are you taking antibiotics for MAC?
Sue

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Thanks you son much for your response. Yes, I am taking Rifampin, Ethambotol, Azithromycin, and waiting on a trainer to show me how to use the Arikayce as it is inhaled. I have also been on Predisone and Bactrim for 2+years. I also take oxybutin for incontinence, vitamin D, Benzonatate for cough, clotrimazole due to thrush and Pantoprazole to help with stomach issues. So many meds I take the MAC meds in the AM and the others in the PM. The Arikayce starts this week and I am to use my Albuterol 30 min prior.

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@helenrivera

Thanks you son much for your response. Yes, I am taking Rifampin, Ethambotol, Azithromycin, and waiting on a trainer to show me how to use the Arikayce as it is inhaled. I have also been on Predisone and Bactrim for 2+years. I also take oxybutin for incontinence, vitamin D, Benzonatate for cough, clotrimazole due to thrush and Pantoprazole to help with stomach issues. So many meds I take the MAC meds in the AM and the others in the PM. The Arikayce starts this week and I am to use my Albuterol 30 min prior.

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Praying for to continue to be well....

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@thumperguy

At risk of losing my ticket to ride here I’ll report not nebulizing for months and remaining concurrently symptom free. Go figure?

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Wow. That is great! But your news would be more meaningful if I knew more about the extent of your disease. Symptom free for a few months is great but bronchiectasis is incurable snd progressive. Do you have bronchiectasis? If so, is it mild, moderate or severe? Did you (do you) have a mycobacterial infection? Nodules or cavities? Pseudomonas? Fungus? Any other? If you did have any lung organisms, were they treated with antibiotics?
Have you had a recent sputum test? Ct scan? If so, what did they show? All clear?

I realize I am asking you to share your private health info but there are people on this forum who have had lobes removed because of bacteria growth and while your success in being symptom free is wonderful news, your decision is not one others should even consider much as EVERYONE would love to stop any treatment as you have done.

It would help to know where you started and where you are now.

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