Remission

Posted by thumperguy @thumperguy, Oct 8, 2022

Several months ago I reported going into remission from obvious symptoms of MAC and BRONCH. It’s been months since I last nebulized, even longer since using the percussion vest. Happily, still symptom free.I know we don’t generally speak of achieving “cure” more modestly speaking of “remission”. Probably splitting hairs, but curious about your thoughts on the topic. Clearly it’s not the word but the lived experience that counts. Don (Thumperguy).

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Hi!
So happy for you that you are symptom free!! No matter what we call it, it must be glorious!
Such a mysterious illness that affects each person differently.
I don’t neb at all and respiratory symptoms for me are of much lesser degree than constitutional ( ie. fever, fatigue, weight loss, and overall feeling of unwell). My 6 month mark of treatment is upcoming and hope I can report “ remission”!

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@thumperguy "Remission" is the word my pulmonologist uses too! But I have continued 7% saline nebs several times a week and habitual airway clearance twice a day (mostly Aerobika once a day & post exertion once a day) along with a different and much more effective asthma medication.

We shall see this week if I am still there.
Sue

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@sueinmn

@thumperguy "Remission" is the word my pulmonologist uses too! But I have continued 7% saline nebs several times a week and habitual airway clearance twice a day (mostly Aerobika once a day & post exertion once a day) along with a different and much more effective asthma medication.

We shall see this week if I am still there.
Sue

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Congrats. What is the different asthma medication that you find more effective? Thanks, Jen

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@jjohnston60

Congrats. What is the different asthma medication that you find more effective? Thanks, Jen

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Hello & welcome to Mayo Connect, I see that you have been a member for a while, but this is the first time you have posted a message. I hope I can answer sensibly, because my asthma has been an unsolved puzzle for over 30 years.

I should explain that in addition to asthma I have allergies, bronchiectasis, reactive airways (spasm in reaction to scents, allergies, exertion - but not always) and have been treated for mycobacteria avium complex (MAC), pseudomonas and repeated bronchitis. 4 years of treatment and daily airway clearance with saline SEEMED like it should be enough to make me comfortable. But, I still had daily episodes of "tight" or "heavy" chest, plus shortness of breath and high heart rate doing something as simple as walking up the stairs or wiping off the table. Heart problems were ruled out.

My pulmonologist suggested we try a Symbicort inhaler often used for COPD, budesonide (corticosteroid) and formoterol fumarate (long acting beta agonist) - my insurance covers the generic form, but it seems to work.

Combined with the Singulair, Mucinex, antihistamine & airway clearance, this seems to have done the trick for me. I hardly have used my rescue inhaler this summer (used to use it several times a day) and I even managed to mow 1/2 the lawn yesterday without wheezing!

I know that conventional wisdom is that people who have or had MAC should not use steroids, but my pulmo & I decided there is a balancing act between being able to breathe comfortably and stay active and reinfection risk.

Are you looking for a better way to control your asthma?
Sue

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@thumperguy Hi Don, like you, I have been in remission for about four years but I still nebulize every other day just because I've always believed "salt heals". I keep thinking of the saline as also keeping my lungs clean. If I'm clear and in remission still on my next CT scan in a year I might nebulize less. Keeping my fingers crossed and exercising six days a week. Nan

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I am thrilled for ALL my forum friends that find wellness and symptom relief…the work and care we go through is not simple…the commitment and sacrifices are real. Bravo👏🏼👏🏼👏🏼 For the reward of wellness…glow with it!

Regina

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Thank you Don. Can you please share your routine, how many times did you nebulize, what percent 7% or 3%, what airway clearance methods and how many time per day you use the vest and etc. I would like to hear so that I want to clear from infection as well.

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@nannette

@thumperguy Hi Don, like you, I have been in remission for about four years but I still nebulize every other day just because I've always believed "salt heals". I keep thinking of the saline as also keeping my lungs clean. If I'm clear and in remission still on my next CT scan in a year I might nebulize less. Keeping my fingers crossed and exercising six days a week. Nan

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Thank you, Nan. So glad that you are in remission for many years. Can you please share your routine, how many times did you nebulize, what percent 7% or 3%, what airway clearance methods and how many time per day you use the vest and etc. I would like to hear so that I want to clear from infection as well.

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@sweethighland I've always nebulized with 7% saline, nothing less. And my airway clearance has only been lying on my back and I can clear my airways that way. I've never used a vest, just the nebulizer. I use to nebulize every day but now I do it every other day. I was diagnosed six years ago but have had no progression for the last four years and I attribute that to the saline solution and exercising six days a week to keep my lungs in shape (as prescribed to me by best friend who is a doctor and when she heard about my diagnosis six years ago she said I had to exercise every day so I did what she said. She's smart.) I did take the big three antibiotics six years ago for one year but I really don't want to do that again if I don't have to. Hope that helps. Nan

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I’m dripping with gratitude. I haven’t nebulized for months and haven’t had a flare-up either . Spontaneous remission rocks. May all you guys and gals have equally good luck!

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