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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Nancy C | @nac1 | Oct 28, 2021
In reply to @jenblalock "Hi Nancy. I am reinfected with MAC (after 4 years) and am on meds 3 x..." + (show)
@jenblalock

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.

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Jen, I am so sorry you are reinfected with MAC. Are you having any side effects from the meds? I have an appointment with my pulmonologist next week and my infectious disease doctor in December. I really fear taking the recommended antibiotics because I don't react well to strong ones. I only had a small amount of growth when I had the last CT Scan. So I keep walking and exercising and taking Turmeric. I keep looking for a natural way to beat this disease. I live in Louisiana and I think the cooler weather is helping my condition.

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Nancy C | @nac1 | Oct 28, 2021
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

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Hi Irene, I am new to the forum. Your words were very encouraging. Have not taken the big three yet; just using the Nebulizer, walking and exercising and taking Turmeric. Really fear taking such strong antibiotics because of side effects. Since MAC is caused by environmental conditions, I live in the South and believe I got MAC from blowing leaves and debris off my driveway with a blower without using a Mask(before Covid). I sure do now.

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Nancy C | @nac1 | Oct 28, 2021
In reply to @sueinmn "Hello Jennifer - your feelings are very normal for someone newly diagnosed with a little-known illness...." + (show)
@sueinmn

Hello Jennifer - your feelings are very normal for someone newly diagnosed with a little-known illness.
The others who use/have used Arikayce can chime in here, but I'm pretty sure you need to report loss of voice to your doc. He may modify your regimen or have you take periodic breaks.
I should mention that Traditional Medicinals brand has 2 great herbal teas that can help - Throat Coat soothes the throat and Breathe Easy, which I drink every day, helps loosen mucus to clear lungs. They are available many places in the tea aisle - including Supermarkets, WalMart, and on line at Vitacost.com
Sue

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Sue, I use Throat Coat Tea to soothe my throat. What is Breathe Easy, a tea?

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1 reply
Nancy C | @nac1 | Oct 28, 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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Correction. I was diagnosed in March of this year! It just seems like a year and half ago!

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Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 28, 2021
In reply to @nac1 "Sue, I use Throat Coat Tea to soothe my throat. What is Breathe Easy, a tea?" + (show)
@nac1

Sue, I use Throat Coat Tea to soothe my throat. What is Breathe Easy, a tea?

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Helps thin the mucus and makes cough less "tight". I do use Throat Coat if I have a raw throat or cold.
Sue

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helenrivera | @helenrivera | Jul 10, 2022

Hello, been on Arykace for 10 days and the 3 antibiotics since 6/20/22. Yes, I have pain with MAC/Bronchiactis. My right side towards my back hurts and my voice is raspy. My pain has improved but the coughing irritates the back pain. I gargle and drink lots of water which I boil and warm drinks. I hate this and pray a cure is found soon....

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masydnor | @masydnor | Sep 20, 2022

Hi, I am new to the group. Has everyone with MAC given up dining out and groups??

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3 replies
masydnor | @masydnor | Sep 20, 2022

Will getting COVID or flu etc make the MAC worse.

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helenrivera | @helenrivera | Sep 21, 2022
In reply to @masydnor "Hi, I am new to the group. Has everyone with MAC given up dining out and..." + (show)
@masydnor

Hi, I am new to the group. Has everyone with MAC given up dining out and groups??

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Hello, I have. If I do to put its in very small groups of 3 it 4. This MAC has changed my life. I keep telling myself this is temporary and this too shall pass. .. I am on the 3 antibiotics + Ariykace. Just keep reminding yourself this is temporary...

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Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 21, 2022
In reply to @masydnor "Hi, I am new to the group. Has everyone with MAC given up dining out and..." + (show)
@masydnor

Hi, I am new to the group. Has everyone with MAC given up dining out and groups??

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During Covid we stopped. Then we formed a tiny circle - us, our kids & grands, and stayed apart if anyone had any illness.

We have gradually widened our circle, but indoor crowd events are still limited. We do outdoor things, even in crowds, without much concern. The air movement is excellent at diluting germs and carrying them away. (This was well-documented in 2020 during the protests and marches after the death of George Floyd - we saw no uptick in COVID infections during that time.)

We have gone to a few funerals fully masked, but have passed on other crowded social events. We have gone to "arena" events - where there is a lot of space & air movement, but we wear masks if we will be within 6' of others for any amount of time.

As the outdoor dining season is ending here in MN, we will go back to last year's practice of meeting friends in small groups during off-hours to eat out. The "upside" is really good service! Or we bring takeout to someone's home.

Just our way of dealing with this now long-term issue. Neither of us has caught Covid, flu, or a cold following this plan for over a year now.
Sue

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