1. < MAC & Bronchiectasis

MAC: Anyone ever felt pain from MAC? So many questions

Posted by jr2366 (Jennifer) @jr2366, Dec 17, 2020

I was just diagnosed with Mac lung disease Just few weeks ago I would like to know if there’s any body who can give me some positive advice for me as I’m just learning about all this I’m currently on medication it’s an inhaler daily for this which I only started 2 days ago I have a year to 18 months to stay on this dr says. Medication is called Arikayce has anyone else been in this medicine ? I was wondering has anyone ever felt pain from MAC also. So many questions I’m sorry but any advice would help a lot thanks Jennifer

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jr2366 (Jennifer) | @jr2366 | Dec 29, 2020
In reply to @irene5 "Jennifer it is good that you have support within your family. Don’t stress too much about..." + (show)
@irene5

Jennifer it is good that you have support within your family. Don’t stress too much about how you got this disease. My family first thought I got it at the dentist’s office because of the aerosolized water. Then we thought it was because of my teaching in old buildings for so many years. The long and short of all of that is it doesn’t really matter where - what matters is getting rid of it before it causes lung damage. There seems to be a body type with nodular MAC, and nodular MAC is slower growing than cavitory MAC. I think Terri our mentor explained that to you. MAC will wax and wane, and it is typically hard to get rid of. However, it is written that most people who have MAC die with MAC not from MAC. In other words you will most likely live a long life and die from something other than MAC. For you to stay positive I suggest you try mindfulness techniques, eat really healthy, and do physical activities as much as possible even if you don’t want to. I don’t know if you are a religious person or not, but the way I look at it, the good God’s got this so whenever I feel down about it I remember that. Each of us has a different journey with this, and I truly feel badly that you are so distraught. This group of intelligent, knowledgeable people will be here virtually to help. I can’t stress enough the importance of having both a pulmonologist and infectious disease doctor who work together for your benefit. Arikayce is really not meant to be used by itself but in conjunction with other meds. Some of us do three days a week and some seven. But these are things you really should talk to your infectious disease doctor about - before March! Wishing you less stress! Irene

Jump to this post

Thank you so much I will look into an infectious disease doctor I really do know of anything I guess I can ask around and thanks for that positive feedback you write I need that you have no idea . I tell you what I do have on my mind is already we have this MAC lung issue what if we come down with a cold one day and like I had last year it was bad it turned into pneumonia and that’s before they knew what I had in my lungs I wonder if even in Arikayce they could possibly treat my bad cold with antibiotics if needed? I am a Catholic I go to mass often , I also work in the schools many different ones for years older and new. I’m going to call my dr today to see if I can get an inhaler to open up the lungs not sure if he will give and how often to use I guess I find out as I go along thanks so much for helping me out I appreciate it a lot 😃

REPLY
jr2366 (Jennifer) | @jr2366 | Dec 29, 2020
In reply to @irene5 "Jennifer it is good that you have support within your family. Don’t stress too much about..." + (show)
@irene5

Jennifer it is good that you have support within your family. Don’t stress too much about how you got this disease. My family first thought I got it at the dentist’s office because of the aerosolized water. Then we thought it was because of my teaching in old buildings for so many years. The long and short of all of that is it doesn’t really matter where - what matters is getting rid of it before it causes lung damage. There seems to be a body type with nodular MAC, and nodular MAC is slower growing than cavitory MAC. I think Terri our mentor explained that to you. MAC will wax and wane, and it is typically hard to get rid of. However, it is written that most people who have MAC die with MAC not from MAC. In other words you will most likely live a long life and die from something other than MAC. For you to stay positive I suggest you try mindfulness techniques, eat really healthy, and do physical activities as much as possible even if you don’t want to. I don’t know if you are a religious person or not, but the way I look at it, the good God’s got this so whenever I feel down about it I remember that. Each of us has a different journey with this, and I truly feel badly that you are so distraught. This group of intelligent, knowledgeable people will be here virtually to help. I can’t stress enough the importance of having both a pulmonologist and infectious disease doctor who work together for your benefit. Arikayce is really not meant to be used by itself but in conjunction with other meds. Some of us do three days a week and some seven. But these are things you really should talk to your infectious disease doctor about - before March! Wishing you less stress! Irene

Jump to this post

I ran a lot of this info along with my husband and he is concerned however he asked why did I need the infectious disease dr as well is that fit more medication?

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1 reply
irene5 Irene Estes | @irene5 | Dec 29, 2020
In reply to @jr2366 "I ran a lot of this info along with my husband and he is concerned however..." + (show)
@jr2366

I ran a lot of this info along with my husband and he is concerned however he asked why did I need the infectious disease dr as well is that fit more medication?

Jump to this post

@jr2366 The reason you need an infectious disease doctor Jennifer is because MAC is an infectious disease. A pulmonologist is great, and you need that as well, but an infectious disease doctor will understand MAC. When I was first diagnosed with MAC I was sent to a pulmonologist and asked for a second opinion which in turn led him to send me to an infectious disease doctor. I was seen in Connecticut where we lived, Tennessee ( Vanderbilt) where we moved to for a hot second, and now I am seen totally at UMASS in Worcester where both my pulmonologist and my ID doctor work. We live in Connecticut. MAC numbers are not normally counted with the CDC ( I think) as you are only infectious to yourself. The reason for the other meds is because Arikayce is used for people with refractory MAC which is MAC that has not been resolved with the Big 3 or patients who have issues taking those meds. Arikayce will not help with a cold because a cold is a virus. MAC is a bacterial infection that is hard to treat which is another reason for seeing an ID doctor. I don’t know where you live, but @alleycatkate had some good suggestions for you. You need to advocate for yourself and learn as much as you can. irene5

REPLY
Nancy C | @nac1 | Oct 18, 2021

I just joined the forum. Was diagnosed with MAC Lung Disease one and a half year ago. Have done well walking daily, exercising at a Woman's health center and using a nebulizer. But lately I am coughing more and experiencing chest pain, hoarseness and fatigue. I am not taking any antibiotics yet because I react so poorly to them. Am hoping I will learn more on this forum.

REPLY
5 replies
heathert | @heathert | Oct 18, 2021
In reply to @nac1 "I just joined the forum. Was diagnosed with MAC Lung Disease one and a half year..." + (show)
@nac1

I just joined the forum. Was diagnosed with MAC Lung Disease one and a half year ago. Have done well walking daily, exercising at a Woman's health center and using a nebulizer. But lately I am coughing more and experiencing chest pain, hoarseness and fatigue. I am not taking any antibiotics yet because I react so poorly to them. Am hoping I will learn more on this forum.

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@nac1 Hi and welcome, I definitly had fatigue and I had burning in my lungs (right side for me) and happened during exercise. take care Heather

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 18, 2021
In reply to @nac1 "I just joined the forum. Was diagnosed with MAC Lung Disease one and a half year..." + (show)
@nac1

I just joined the forum. Was diagnosed with MAC Lung Disease one and a half year ago. Have done well walking daily, exercising at a Woman's health center and using a nebulizer. But lately I am coughing more and experiencing chest pain, hoarseness and fatigue. I am not taking any antibiotics yet because I react so poorly to them. Am hoping I will learn more on this forum.

Jump to this post

Hello Nancy. Welcome to our group; I am very glad that you found us. There is a lot of info in our past discussions, if you go to the discussion list, you could literally scroll through it for hours and see all of the topics we have discussed. There is a lot of helpful things there waiting for you. I will scroll through some and see if I can find some of interest to you. Have you been seen recently for your mac?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 18, 2021
In reply to @nac1 "I just joined the forum. Was diagnosed with MAC Lung Disease one and a half year..." + (show)
@nac1

I just joined the forum. Was diagnosed with MAC Lung Disease one and a half year ago. Have done well walking daily, exercising at a Woman's health center and using a nebulizer. But lately I am coughing more and experiencing chest pain, hoarseness and fatigue. I am not taking any antibiotics yet because I react so poorly to them. Am hoping I will learn more on this forum.

Jump to this post

Hello Nancy. Welcome to our group; I am very glad that you found us. There is a lot of info in our past discussions, if you go to the discussion list, you could literally scroll through it for hours and see all of the topics we have discussed. You can also type in key words in the search box with the magnifying glass at the top of this page. For example: type in the words NEBULIZE SALINE, and discussions will pop up on that topic. That is a good one for you to learn about. There is a lot of helpful things there waiting for you. I would love to hear your feedback after you have ventured through our discussion board. Have you been seen recently for your mac?

REPLY
1 reply
Jen_b | @jenblalock | Oct 25, 2021
In reply to @nac1 "I just joined the forum. Was diagnosed with MAC Lung Disease one and a half year..." + (show)
@nac1

I just joined the forum. Was diagnosed with MAC Lung Disease one and a half year ago. Have done well walking daily, exercising at a Woman's health center and using a nebulizer. But lately I am coughing more and experiencing chest pain, hoarseness and fatigue. I am not taking any antibiotics yet because I react so poorly to them. Am hoping I will learn more on this forum.

Jump to this post

Hi Nancy. I am reinfected with MAC (after 4 years) and am on meds 3 x a week. Are you still seeing your infectious disease doctor or pulmonologist? MAC is a progressive disease and it may be time for a check-up again. I definitely have fatigue with MAC and hoarseness also.

REPLY
1 reply
Nancy C | @nac1 | Oct 28, 2021
In reply to @windwalker "Hello Nancy. Welcome to our group; I am very glad that you found us. There is..." + (show)
@windwalker

Hello Nancy. Welcome to our group; I am very glad that you found us. There is a lot of info in our past discussions, if you go to the discussion list, you could literally scroll through it for hours and see all of the topics we have discussed. You can also type in key words in the search box with the magnifying glass at the top of this page. For example: type in the words NEBULIZE SALINE, and discussions will pop up on that topic. That is a good one for you to learn about. There is a lot of helpful things there waiting for you. I would love to hear your feedback after you have ventured through our discussion board. Have you been seen recently for your mac?

Jump to this post

Thanks Terri. Sorry to be so long in responding. I kept looking at the oldest posts; not the latest. I am seeing my pulmonologist next week and my infectious disease doctor in December. I am using my nebulizer as I type this note. I have been able to avoid taking the antibiotics recommended for this disease by remaining active: walking my dog, working out and taking Turmeric. I have always taken vitamins. I continue to avoid taking the recommended antibiotics because I have such difficult reactions to strong ones. I have not ventured through the site much but will now. Have you taken the meds and how long have you had MAC?

REPLY
Nancy C | @nac1 | Oct 28, 2021
In reply to @heathert "@nac1 Hi and welcome, I definitly had fatigue and I had burning in my lungs (right..." + (show)
@heathert

@nac1 Hi and welcome, I definitly had fatigue and I had burning in my lungs (right side for me) and happened during exercise. take care Heather

Jump to this post

Thanks for the reply Heather. My pain was on the right side also. But I am doing much better lately. I have good days and bad days. But, overall, am doing fairly well.

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