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MAC Diagnosis and Medication side effects

Posted by happyhealthyme @happyhealthyme, Mar 14 12:22pm

I hope my question doesn't dishearten any trying members of this forum, but did anyone consider not going on medications for MAC because of the side effects?

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filefolder1 | @filefolder1 | Mar 14 8:42pm

I felt that way in the beginning. It was after the “watch and wait period” when CT scan showed continued MAC growth that I decided to try medicines so I didn’t progress to cavities. I have the “nodular” kind of MAC. So far I am tolerating the big 3. I have blood work and EKGs monitored monthly, hearing and vision monitored every 3months. Not everyone has horrible side effects. Not everyone can squelch MAC using ACTs only. I based my decision on the results of my CT scans which I have done every 3-4 months or so.

Currently I take the big 3 every M-W-F. If nodular growth continues will switch to everyday per infectious disease Dr instructions.

REPLY
3 replies
happyhealthyme | @happyhealthyme | Mar 14 9:33pm
In reply to @filefolder1 "I felt that way in the beginning. It was after the “watch and wait period” when..." + (show)
@filefolder1

I felt that way in the beginning. It was after the “watch and wait period” when CT scan showed continued MAC growth that I decided to try medicines so I didn’t progress to cavities. I have the “nodular” kind of MAC. So far I am tolerating the big 3. I have blood work and EKGs monitored monthly, hearing and vision monitored every 3months. Not everyone has horrible side effects. Not everyone can squelch MAC using ACTs only. I based my decision on the results of my CT scans which I have done every 3-4 months or so.

Currently I take the big 3 every M-W-F. If nodular growth continues will switch to everyday per infectious disease Dr instructions.

Jump to this post

You are saying something that is very interesting to me -- I do have nodules. I had no idea that nodules had anything to do with MAC. About meds, I'm concerned about hearing loss, since I've already lost so much of my hearing. Should I be seeing a pulmonologist and infectious disease doctor simultaneously? Please, what are ACTs? I'm so new to this and I'm terrified.

REPLY
3 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 14 10:37pm
In reply to @happyhealthyme "You are saying something that is very interesting to me -- I do have nodules. I..." + (show)
@happyhealthyme

You are saying something that is very interesting to me -- I do have nodules. I had no idea that nodules had anything to do with MAC. About meds, I'm concerned about hearing loss, since I've already lost so much of my hearing. Should I be seeing a pulmonologist and infectious disease doctor simultaneously? Please, what are ACTs? I'm so new to this and I'm terrified.

Jump to this post

First the pulmonologist, then the ID doc if 3x per week doesn't do the job. As for hearing loss, 18 months of antibiotics, first 3x per week, then 6 months daily, had very little effect on my already moderate hearing loss and past-moderate tinnitus. I was screened every 6 months for hearing, every 3 months for vision (also have glaucoma) and didn't have any notable adverse effects. My ophthalmologist said in her long career, she has only had a handful of people that had visual problems, and my audiologist said she only had to stop meds on 4 people.
So the risk is relatively low compared to the danger of lung damage.
Have you started airway clearance yet? It can sometimes knock down MAC to the level you don't need antibiotics.
Sue

REPLY
1 reply
happyhealthyme | @happyhealthyme | Mar 14 11:44pm
In reply to @sueinmn "First the pulmonologist, then the ID doc if 3x per week doesn't do the job. As..." + (show)
@sueinmn

First the pulmonologist, then the ID doc if 3x per week doesn't do the job. As for hearing loss, 18 months of antibiotics, first 3x per week, then 6 months daily, had very little effect on my already moderate hearing loss and past-moderate tinnitus. I was screened every 6 months for hearing, every 3 months for vision (also have glaucoma) and didn't have any notable adverse effects. My ophthalmologist said in her long career, she has only had a handful of people that had visual problems, and my audiologist said she only had to stop meds on 4 people.
So the risk is relatively low compared to the danger of lung damage.
Have you started airway clearance yet? It can sometimes knock down MAC to the level you don't need antibiotics.
Sue

Jump to this post

"Airway clearance is also new information for me." I would appreciate any links to where I could learn about it.

REPLY
1 reply
Rick | @rstel7272 | Mar 15 10:09am
In reply to @happyhealthyme "You are saying something that is very interesting to me -- I do have nodules. I..." + (show)
@happyhealthyme

You are saying something that is very interesting to me -- I do have nodules. I had no idea that nodules had anything to do with MAC. About meds, I'm concerned about hearing loss, since I've already lost so much of my hearing. Should I be seeing a pulmonologist and infectious disease doctor simultaneously? Please, what are ACTs? I'm so new to this and I'm terrified.

Jump to this post

Yes, if the Mac or any lung disease is chronic, by all means add an ID to your team. I have found that these Doctors don't really push ACT's so find a good respiratory therapist or self-learn it.

REPLY
1 reply
happyhealthyme | @happyhealthyme | Mar 15 10:47am
In reply to @rstel7272 "Yes, if the Mac or any lung disease is chronic, by all means add an ID..." + (show)
@rstel7272

Yes, if the Mac or any lung disease is chronic, by all means add an ID to your team. I have found that these Doctors don't really push ACT's so find a good respiratory therapist or self-learn it.

Jump to this post

Yes, I was told that my MAC is chronic, and that comes on top of my other lung conditions. Please explain what ACTs are. Thank you.

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 15 11:06am
In reply to @happyhealthyme ""Airway clearance is also new information for me." I would appreciate any links to where I..." + (show)
@happyhealthyme

"Airway clearance is also new information for me." I would appreciate any links to where I could learn about it.

Jump to this post

Airway clearance is one of the pillars of (non-drug) management of Bronchiectasis. Here is a comprehensive video from the World NTM conference in 2023, led by one of Mayo Clinic's own experts, Respiratory Therapist Bradley Boynton.

The video is long, but very informative, so grab your self a cup of tea and settle in for an hour of learning, including a Q&A from their live audience. Then come back and we'll try to answer any questions you might have.
Sue

REPLY
harrynsc | @harrynsc | Mar 15 3:56pm
In reply to @filefolder1 "I felt that way in the beginning. It was after the “watch and wait period” when..." + (show)
@filefolder1

I felt that way in the beginning. It was after the “watch and wait period” when CT scan showed continued MAC growth that I decided to try medicines so I didn’t progress to cavities. I have the “nodular” kind of MAC. So far I am tolerating the big 3. I have blood work and EKGs monitored monthly, hearing and vision monitored every 3months. Not everyone has horrible side effects. Not everyone can squelch MAC using ACTs only. I based my decision on the results of my CT scans which I have done every 3-4 months or so.

Currently I take the big 3 every M-W-F. If nodular growth continues will switch to everyday per infectious disease Dr instructions.

Jump to this post

I take the big three every day. MY doctor has me do a blood test every two weeks,
an EKG once a month, and hearing test and vision test every two months.
Harry

REPLY
2 replies
ecoen | @ecoen | Mar 20 9:32am
In reply to @filefolder1 "I felt that way in the beginning. It was after the “watch and wait period” when..." + (show)
@filefolder1

I felt that way in the beginning. It was after the “watch and wait period” when CT scan showed continued MAC growth that I decided to try medicines so I didn’t progress to cavities. I have the “nodular” kind of MAC. So far I am tolerating the big 3. I have blood work and EKGs monitored monthly, hearing and vision monitored every 3months. Not everyone has horrible side effects. Not everyone can squelch MAC using ACTs only. I based my decision on the results of my CT scans which I have done every 3-4 months or so.

Currently I take the big 3 every M-W-F. If nodular growth continues will switch to everyday per infectious disease Dr instructions.

Jump to this post

It is very heartening to me to hear that you are tolerating the "Big 3". How long have you been taking them? I have an aspergilllus infection as well as MAC with a cavity. I started this week treating the aspergillus. I understand that aspergilllus as well as MAC can cause cavities so we are starting off treating the aspergillus to see if there is any success with closing the cavity. I will move into the Big 3 sometime in the not too distant future and understand I will then be on all 4 medicines for 12-18 months. If the cavity doesn't close, they will consider adding a weekly infusion. This for someone who rarely takes any medicine. Fingers crossed this all works and I can tolerate the medicine. I am very happy to have this group.

REPLY
2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 20 11:19am
In reply to @ecoen "It is very heartening to me to hear that you are tolerating the "Big 3". How..." + (show)
@ecoen

It is very heartening to me to hear that you are tolerating the "Big 3". How long have you been taking them? I have an aspergilllus infection as well as MAC with a cavity. I started this week treating the aspergillus. I understand that aspergilllus as well as MAC can cause cavities so we are starting off treating the aspergillus to see if there is any success with closing the cavity. I will move into the Big 3 sometime in the not too distant future and understand I will then be on all 4 medicines for 12-18 months. If the cavity doesn't close, they will consider adding a weekly infusion. This for someone who rarely takes any medicine. Fingers crossed this all works and I can tolerate the medicine. I am very happy to have this group.

Jump to this post

It is wonderful that they found the aspergillus and are treating it first, as it can be even more reluctant than MAC to go away.
A positive attitude and a commitment to getting well can go a long way towards helping us tolerate the medications.
And this wonderful group will answer your questions and encourage you day-by-day because they understand.
Sue

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