1. < MAC & Bronchiectasis

MAC symptoms

Posted by suzylulu @suzylulu, Apr 23, 2017

I was diagnosed with MAC about 6 months ago but have been on the 3 medicines for almost a month. What are the symptoms of MAC and the drugs. I am having a lot of trouble with weakness, muscle pain.. I periodically get chills and a fever. Is this normal. I also have pulmonary hypertension and an autoimmune disease-Scleroderma..

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suzylulu | @suzylulu | Apr 24, 2017
In reply to @beatitnow "@chinasmom and @suzylulu.....Becky, where do you live? Just wondering if anyone could help give you a..." + (show)
@beatitnow

@chinasmom and @suzylulu.....Becky, where do you live? Just wondering if anyone could help give you a pulmonary doc recommendation. Just curious, are you the one that had all the problems with your medication when you started and your daughter was helping you out? I hope you get some answers.

@suzylulu.....the only reason I knew I had MAI was because I threw up blood about 4 years ago when we were stationed in Germany. While in Germany they monitored my status through catscans, but nothing that they wanted to act on with medication. (They did not tell me I had bronchiectasis nor MAI...he may not have known what to look for, or maybe I didn't have it at the time?) Then, I moved a little less than 2 years later and started seeing a St. Louis pulmonologist. He diagnosed me with mild bronchiectasis and probability of MAI. However, I guess my MAI was not active so he did not act with medicine. This past Xmas, my catscan got worse with the MAI and the bronchiectasis, so I took a sputum sample to ensure that I had MAI and started on the meds. I will have now been on all three meds for one month this Thursday. I am lucky that I have really had no symptoms taking the medicine....occasionally a headache which could also be from dehydration too. I get tired at times, but nothing that I can't usually push through. But, I also will not hesitate to lay down if I need it. Maybe I have taken a nap 3 times in the month. OH....yes, I do have a side effect...a little insomnia. I think the insomnia might be getting a "little" better...I feel I am able to get "enough" sleep to help me feel rested when I wake up.

Jump to this post

I also suffer from terrible breathlessness

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 24, 2017
In reply to @swrtwdml "I live in Rochester MN, part of the year, but I understand that Dr. Aksamite (sp..." + (show)
@swrtwdml

I live in Rochester MN, part of the year, but I understand that Dr. Aksamite (sp ?) is not taking new patients. Can someone suggest a doctor @ Mayo Clinic in AZ?

Jump to this post

<br><br><br><br><br>Hello. The Mayo Clinic has very high standards; I feel like they would not <br>hire just any slouch. I would feel confident that any doctor you saw there would <br>be top notch. I have seen three at the Mayo in Jacksonville, and hold all of <br>them in high regard. In a nutshell, I don't think you can go wrong with anyone <br>there.<br> <br><br>

REPLY
chinasmom | @chinasmom | Apr 25, 2017
In reply to @colleenyoung "Hi @suzylulu and welcome to the MAC group on Connect. Please hop over to the main..." + (show)
@colleenyoung

Hi @suzylulu and welcome to the MAC group on Connect.
Please hop over to the main discussion and introduce yourself to the other members here: http://mayocl.in/2oigEjD (This link will take you to the last page of all the messages, but I also encourage you to read through the past messages.)

According to National Jewish Health (NJH) http://bit.ly/2ozAoLj
"Most NTM infections and resulting symptoms progress slowly. Symptoms may include:
- Fever
- Weight loss
- Cough
- Lack of appetite
- Night sweats
- Blood in the sputum (phlegm)
- Loss of energy"

@katemn @tdrell @lindam272 @chinasmom @beatitnow @irene5 @nannette @windwalker @128128terry11t @ginak @ling123 what symptoms did/do you experience?

Suzy, have your symptoms changed since starting treatment?

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Its kind of ashame that we get our diagnosis and in hind sight we see we' ve had these symptoms for awhile. Un treated or under treated our lungs have paid the price. I wish it were different but i dont see things changeing. When you know the truth. You can then arm yourself with really good information and then pass it on. Tell us and your doctors. Thanks for asking questions and telling your story so that i can learn from you!
Becky

REPLY
suzylulu | @suzylulu | Apr 25, 2017
In reply to @colleenyoung "Hi @suzylulu and welcome to the MAC group on Connect. Please hop over to the main..." + (show)
@colleenyoung

Hi @suzylulu and welcome to the MAC group on Connect.
Please hop over to the main discussion and introduce yourself to the other members here: http://mayocl.in/2oigEjD (This link will take you to the last page of all the messages, but I also encourage you to read through the past messages.)

According to National Jewish Health (NJH) http://bit.ly/2ozAoLj
"Most NTM infections and resulting symptoms progress slowly. Symptoms may include:
- Fever
- Weight loss
- Cough
- Lack of appetite
- Night sweats
- Blood in the sputum (phlegm)
- Loss of energy"

@katemn @tdrell @lindam272 @chinasmom @beatitnow @irene5 @nannette @windwalker @128128terry11t @ginak @ling123 what symptoms did/do you experience?

Suzy, have your symptoms changed since starting treatment?

Jump to this post

You are right. It is very frustrating. About 2 years ago they found nodules in my lungs and it has taken all this time for a diagnosis. I've been on the meds for almost a month. The awful weakness could be MAC treatment or my autoimmune disease-scleroderma.

REPLY
chinasmom | @chinasmom | Apr 25, 2017
In reply to @beatitnow "@chinasmom and @suzylulu.....Becky, where do you live? Just wondering if anyone could help give you a..." + (show)
@beatitnow

@chinasmom and @suzylulu.....Becky, where do you live? Just wondering if anyone could help give you a pulmonary doc recommendation. Just curious, are you the one that had all the problems with your medication when you started and your daughter was helping you out? I hope you get some answers.

@suzylulu.....the only reason I knew I had MAI was because I threw up blood about 4 years ago when we were stationed in Germany. While in Germany they monitored my status through catscans, but nothing that they wanted to act on with medication. (They did not tell me I had bronchiectasis nor MAI...he may not have known what to look for, or maybe I didn't have it at the time?) Then, I moved a little less than 2 years later and started seeing a St. Louis pulmonologist. He diagnosed me with mild bronchiectasis and probability of MAI. However, I guess my MAI was not active so he did not act with medicine. This past Xmas, my catscan got worse with the MAI and the bronchiectasis, so I took a sputum sample to ensure that I had MAI and started on the meds. I will have now been on all three meds for one month this Thursday. I am lucky that I have really had no symptoms taking the medicine....occasionally a headache which could also be from dehydration too. I get tired at times, but nothing that I can't usually push through. But, I also will not hesitate to lay down if I need it. Maybe I have taken a nap 3 times in the month. OH....yes, I do have a side effect...a little insomnia. I think the insomnia might be getting a "little" better...I feel I am able to get "enough" sleep to help me feel rested when I wake up.

Jump to this post

@beatitnow, hope you are feeling good today. I live in Pevely, Missouri, 30 miles south from st. Louis. So i would love to have your doctor information if you don't mind. Thanks for the concern, but i think that was carmen who's mom was really really sick from her meds. But i did try to help her as much we can. I hope they're doing better. Stay strong!!!
Becky

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 25, 2017
In reply to @colleenyoung "Hi @suzylulu and welcome to the MAC group on Connect. Please hop over to the main..." + (show)
@colleenyoung

Hi @suzylulu and welcome to the MAC group on Connect.
Please hop over to the main discussion and introduce yourself to the other members here: http://mayocl.in/2oigEjD (This link will take you to the last page of all the messages, but I also encourage you to read through the past messages.)

According to National Jewish Health (NJH) http://bit.ly/2ozAoLj
"Most NTM infections and resulting symptoms progress slowly. Symptoms may include:
- Fever
- Weight loss
- Cough
- Lack of appetite
- Night sweats
- Blood in the sputum (phlegm)
- Loss of energy"

@katemn @tdrell @lindam272 @chinasmom @beatitnow @irene5 @nannette @windwalker @128128terry11t @ginak @ling123 what symptoms did/do you experience?

Suzy, have your symptoms changed since starting treatment?

Jump to this post

<br><br><br><br><br>Hi there! I am curious; what symptoms did you have when your Scleroderma <br>first presented?<br> <br><br>

REPLY
suzylulu | @suzylulu | Apr 25, 2017
In reply to @colleenyoung "Hi @suzylulu and welcome to the MAC group on Connect. Please hop over to the main..." + (show)
@colleenyoung

Hi @suzylulu and welcome to the MAC group on Connect.
Please hop over to the main discussion and introduce yourself to the other members here: http://mayocl.in/2oigEjD (This link will take you to the last page of all the messages, but I also encourage you to read through the past messages.)

According to National Jewish Health (NJH) http://bit.ly/2ozAoLj
"Most NTM infections and resulting symptoms progress slowly. Symptoms may include:
- Fever
- Weight loss
- Cough
- Lack of appetite
- Night sweats
- Blood in the sputum (phlegm)
- Loss of energy"

@katemn @tdrell @lindam272 @chinasmom @beatitnow @irene5 @nannette @windwalker @128128terry11t @ginak @ling123 what symptoms did/do you experience?

Suzy, have your symptoms changed since starting treatment?

Jump to this post

Hi Windwalker, they discovered scleroderma when I saw the doctor when my fingers were turning purple and then white when ever I got cold. They did blood work

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 25, 2017
In reply to @colleenyoung "Hi @suzylulu and welcome to the MAC group on Connect. Please hop over to the main..." + (show)
@colleenyoung

Hi @suzylulu and welcome to the MAC group on Connect.
Please hop over to the main discussion and introduce yourself to the other members here: http://mayocl.in/2oigEjD (This link will take you to the last page of all the messages, but I also encourage you to read through the past messages.)

According to National Jewish Health (NJH) http://bit.ly/2ozAoLj
"Most NTM infections and resulting symptoms progress slowly. Symptoms may include:
- Fever
- Weight loss
- Cough
- Lack of appetite
- Night sweats
- Blood in the sputum (phlegm)
- Loss of energy"

@katemn @tdrell @lindam272 @chinasmom @beatitnow @irene5 @nannette @windwalker @128128terry11t @ginak @ling123 what symptoms did/do you experience?

Suzy, have your symptoms changed since starting treatment?

Jump to this post

<br><br><br><br><br>I ask because my daughter has severe Raynaud's. That sounds like you have <br>that as well. It can be a secondary disease to a primary one that is typically <br>Lupus or scleroderma.Her fingers turn colors too and worse. She sometimes looks <br>like someone has poured scolding water all over her body. She has other symtoms <br>that concern me too that make me think she may have the scleroderma. i.e. she <br>complains that her face feels tight, the skin on her hands look tight, and her <br>arms feel hard, but not from muscle, they feel different. Her dr tested her for <br>Lupus and it was negative. I don't know why he hasn't tested for the other. <br>Would she see a rheumatologists to get to the bottom of this? Thank you, Terri <br>M.<br> <br><br>

REPLY
suzylulu | @suzylulu | Apr 26, 2017
In reply to @colleenyoung "Hi @suzylulu and welcome to the MAC group on Connect. Please hop over to the main..." + (show)
@colleenyoung

Hi @suzylulu and welcome to the MAC group on Connect.
Please hop over to the main discussion and introduce yourself to the other members here: http://mayocl.in/2oigEjD (This link will take you to the last page of all the messages, but I also encourage you to read through the past messages.)

According to National Jewish Health (NJH) http://bit.ly/2ozAoLj
"Most NTM infections and resulting symptoms progress slowly. Symptoms may include:
- Fever
- Weight loss
- Cough
- Lack of appetite
- Night sweats
- Blood in the sputum (phlegm)
- Loss of energy"

@katemn @tdrell @lindam272 @chinasmom @beatitnow @irene5 @nannette @windwalker @128128terry11t @ginak @ling123 what symptoms did/do you experience?

Suzy, have your symptoms changed since starting treatment?

Jump to this post

I would definitely go to a dermatologist

REPLY
chinasmom | @chinasmom | Apr 27, 2017
In reply to @beatitnow "@chinasmom and @suzylulu.....Becky, where do you live? Just wondering if anyone could help give you a..." + (show)
@beatitnow

@chinasmom and @suzylulu.....Becky, where do you live? Just wondering if anyone could help give you a pulmonary doc recommendation. Just curious, are you the one that had all the problems with your medication when you started and your daughter was helping you out? I hope you get some answers.

@suzylulu.....the only reason I knew I had MAI was because I threw up blood about 4 years ago when we were stationed in Germany. While in Germany they monitored my status through catscans, but nothing that they wanted to act on with medication. (They did not tell me I had bronchiectasis nor MAI...he may not have known what to look for, or maybe I didn't have it at the time?) Then, I moved a little less than 2 years later and started seeing a St. Louis pulmonologist. He diagnosed me with mild bronchiectasis and probability of MAI. However, I guess my MAI was not active so he did not act with medicine. This past Xmas, my catscan got worse with the MAI and the bronchiectasis, so I took a sputum sample to ensure that I had MAI and started on the meds. I will have now been on all three meds for one month this Thursday. I am lucky that I have really had no symptoms taking the medicine....occasionally a headache which could also be from dehydration too. I get tired at times, but nothing that I can't usually push through. But, I also will not hesitate to lay down if I need it. Maybe I have taken a nap 3 times in the month. OH....yes, I do have a side effect...a little insomnia. I think the insomnia might be getting a "little" better...I feel I am able to get "enough" sleep to help me feel rested when I wake up.

Jump to this post

@beatitnow, I am looking for a new mac doctor in or around st. Louis. If you are happy with yours could you please post contact information. Thank you!
Becky

REPLY
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