1. < MAC & Bronchiectasis

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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Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 15, 2022
In reply to @fdixon63 "Hi Sue. You must be feeling like your riding a cloud. So happy for you. I..." + (show)
@fdixon63

Hi Sue. You must be feeling like your riding a cloud. So happy for you.
I wonder what you meant with the sentence, "Stop all news, including 7% saline, unless an exacerbation. Continue airway clearance daily." What airway clearance in particular? I thought that is what nebbing was for. Faye

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Stopping levabuterol & 7% saline nebs. I will still do huff coughing &/or Aerobika after exercise to clear airways. Today, I weeded in my gardens (bend, stand, bend...) and after 15 minutes, I was coughing spontaneously & bringing up mucus.
Sue

REPLY
irene5 Irene Estes | @irene5 | Jul 15, 2022

Interestingly, I recently had a negative bronch. I can’t tell you all how thrilled I was with that news. My lung doctor was surprised. A CT scan was done, and unfortunately things weren’t so great. I hesitate to say that out loud as I am a positive person. The reason I had a negative bronch is because it is in the parenchyma ( the meat) of my lungs. I am having robotic surgery in August. So I guess we have to be careful with thinking we are good when we may not be good at all. My thought is that a CT scan is more revealing than a bronch which may not grow MAC and show a negative result giving a person a false sense of wellness. I will say “ignorance is bliss.” Knowing what I know now about what is going in my lungs is keeping me up at night. @irene5

REPLY
1 reply
ReRE | @jcwest211 | Jul 15, 2022
In reply to @sueinmn "I'm joining the club! Pulmo visit today, best CT and spirometry results ever! New diagnosis -current..." + (show)
@sueinmn

I'm joining the club!
Pulmo visit today, best CT and spirometry results ever!
New diagnosis -current tightness and shortness of breath are the result of asthma, not my Bronchiectasis.
Medications changed to try to open and soothe airways. Stop all news, including 7% saline, unless an exacerbation. Continue airway clearance daily.
New routine: Symbicort, Mucinex tandNAC twices a day, singulair and Ellipta Incruse once a day. Neb ONLY for severe attack or exacerbation...
Also, according to pulmo, likely to try alternatives if MAC positive in future, based on current guidelines and my prior reactions.
Doc and respiratory therapists were as happy as me - my numbers are best in 5 years.
Sue

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Congratulations, Sue! This is great news! Stay well!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 17, 2022
In reply to @irene5 "Interestingly, I recently had a negative bronch. I can’t tell you all how thrilled I was..." + (show)
@irene5

Interestingly, I recently had a negative bronch. I can’t tell you all how thrilled I was with that news. My lung doctor was surprised. A CT scan was done, and unfortunately things weren’t so great. I hesitate to say that out loud as I am a positive person. The reason I had a negative bronch is because it is in the parenchyma ( the meat) of my lungs. I am having robotic surgery in August. So I guess we have to be careful with thinking we are good when we may not be good at all. My thought is that a CT scan is more revealing than a bronch which may not grow MAC and show a negative result giving a person a false sense of wellness. I will say “ignorance is bliss.” Knowing what I know now about what is going in my lungs is keeping me up at night. @irene5

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Hello Irene! It's been awhile..... You bring up a very good subject: One thinking they are well, when, in fact, they are not. I have been going to Mayo Clinic since 2013, and tested negative for MAC since 2014. All chest x-rays and CT's showed little change over the years and then Blam! I am told that I have two colonies of MAI MAC and aspergillus, and....need a lung transplant soon! Up until Dec 2021; I thought I was holding my own and staying steady. Actually, my lung function was steadily deteriorating. I don't know if there is any correlation, but I was taken off of my Tobramycin in Dec 2021, but kept on the cipro every other month..(and now have tested pos for MAI) A dr recently told me that since I had been on cipro for 9 years; I am most likely resistant to it by now. So, I have been unprotected by prophylactic antibiotics for six months now. I have a Zoom meeting with my I.D. this Tues, so I will see what she recommends.

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 17, 2022
In reply to @thumperguy "Sue, “the best you might be willing to say” is well stated and certainly adequate. It’s..." + (show)
@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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Hi Don, just wondering; why would you want to chance it? I can understand if you are burnt out on doing this routine every day. I think we can all identify with that.

REPLY
irene5 Irene Estes | @irene5 | Jul 17, 2022
In reply to @windwalker "Hello Irene! It's been awhile..... You bring up a very good subject: One thinking they are..." + (show)
@windwalker

Hello Irene! It's been awhile..... You bring up a very good subject: One thinking they are well, when, in fact, they are not. I have been going to Mayo Clinic since 2013, and tested negative for MAC since 2014. All chest x-rays and CT's showed little change over the years and then Blam! I am told that I have two colonies of MAI MAC and aspergillus, and....need a lung transplant soon! Up until Dec 2021; I thought I was holding my own and staying steady. Actually, my lung function was steadily deteriorating. I don't know if there is any correlation, but I was taken off of my Tobramycin in Dec 2021, but kept on the cipro every other month..(and now have tested pos for MAI) A dr recently told me that since I had been on cipro for 9 years; I am most likely resistant to it by now. So, I have been unprotected by prophylactic antibiotics for six months now. I have a Zoom meeting with my I.D. this Tues, so I will see what she recommends.

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OMG!! I am so sorry to hear that Terri. Thank you for your reply- yes it’s been a while. I have really been struggling which is why I have been MIA. At 72 pounds there isn’t much left of me! I feel like all the meds and bronchs have been for naught. I will lift you up in prayer and hope all goes well for both of us. Sending you a big ole hug. Irene

REPLY
lweirdo1 | @lweirdo1 | Jul 17, 2022

Anyone know much about ARIKAYCE? They are pushing hard for me to start this but the side effects listed are pretty intense. Has this helped anyone with MAC that you know of??

REPLY
3 replies
shirleye2 | @shirleye2 | Jul 18, 2022
In reply to @lweirdo1 "Anyone know much about ARIKAYCE? They are pushing hard for me to start this but the..." + (show)
@lweirdo1

Anyone know much about ARIKAYCE? They are pushing hard for me to start this but the side effects listed are pretty intense. Has this helped anyone with MAC that you know of??

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I am tolerating Arikayce well. I started it in March along with the Big 3. I had my first sputum sample done in mid May and it came back negative. I have MAC with cavitation. Have all the routine testing done.

REPLY
nannette | @nannette | Jul 18, 2022
In reply to @sueinmn "I'm joining the club! Pulmo visit today, best CT and spirometry results ever! New diagnosis -current..." + (show)
@sueinmn

I'm joining the club!
Pulmo visit today, best CT and spirometry results ever!
New diagnosis -current tightness and shortness of breath are the result of asthma, not my Bronchiectasis.
Medications changed to try to open and soothe airways. Stop all news, including 7% saline, unless an exacerbation. Continue airway clearance daily.
New routine: Symbicort, Mucinex tandNAC twices a day, singulair and Ellipta Incruse once a day. Neb ONLY for severe attack or exacerbation...
Also, according to pulmo, likely to try alternatives if MAC positive in future, based on current guidelines and my prior reactions.
Doc and respiratory therapists were as happy as me - my numbers are best in 5 years.
Sue

Jump to this post

@sueinmn What great news for you! I would be hopping and skipping all over the place! Congratulations! Nan

REPLY
helenrivera | @helenrivera | Jul 19, 2022
In reply to @lweirdo1 "Anyone know much about ARIKAYCE? They are pushing hard for me to start this but the..." + (show)
@lweirdo1

Anyone know much about ARIKAYCE? They are pushing hard for me to start this but the side effects listed are pretty intense. Has this helped anyone with MAC that you know of??

Jump to this post

Hello, I started the Aryikace 7/1/22 and its harder than I thought but so far manageable. I also take the 3 other strong antibiotics. I have MAC with a very large cavity, lots or nodules and cysts in to of several other lung issues and I am praying this will at least stop the MAC. I am to have my 1st sputum in August 2022 and pray its negative. I feel the meds will help most people of they can tolerate them as they disrupt your whole being. Good Bless us all and thank you for this forum.

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