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..

Liked by chinasmom

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

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@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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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

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

REPLY
@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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I would definitely go to a dermatologist

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@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.

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@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

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@chinasmom….my doctor is Dr. Castro at Barnes Jewish Hospital. The phone number is 314-454-8917. I hope it works out. What part of St. Louis do you live?

Liked by chinasmom

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@katemn….I am praying for you. You do so much good for everyone. I hope your sickness gets under control real soon. You deserve the best! Keep your head up and hopeful! 🙂

Liked by chinasmom

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@katemn…I have been a silent observer for a long time and don’t comment often because of time restraints but have so been so touched by your generosity of spirit and kindness of heart. I hope you feel better soon because you have helped so many. I believe you’re an angel that has been sent to help all of us get through these issues. Take care of yourself and I hope you’re back to your old self soon! Nan

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@beatitnow

@chinasmom….my doctor is Dr. Castro at Barnes Jewish Hospital. The phone number is 314-454-8917. I hope it works out. What part of St. Louis do you live?

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@beatitnow, I live in pevely. Its south of St.louis between Arnold and Festus in Missouri. Lots of rain coming our way. I had to cancel my eye exam today. They dialate my eyes and I have a hard time driveing in the rain without them being dilated. I wonder if everyone gets their eyes dialted at their monthly exams? I have also had them change my eye glass prescription twice since December and had a different place fill it but still don’t think either one is right. I might go back to Crown optical where I used to go and just see if they give me the same prescription. Thank you for you doctor’s information. I hope you and everyone reading this has a great day!!!!
Becky

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@nannette

@katemn…I have been a silent observer for a long time and don’t comment often because of time restraints but have so been so touched by your generosity of spirit and kindness of heart. I hope you feel better soon because you have helped so many. I believe you’re an angel that has been sent to help all of us get through these issues. Take care of yourself and I hope you’re back to your old self soon! Nan

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@nannette, I too was a silent observer and told Katherine @katemn that there were probably alot more people just reading through then there were posting. So her hard work was reaching lots more people then she could even imagine. Im really glad when someone comes out and tells their story even if its a short one. You are right @katemn is our Angel and I hope she is getting better everyday. Im ready for her to take the wheel when she is ready .Stay strong everyone!
Becky

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@nannette

@katemn…I have been a silent observer for a long time and don’t comment often because of time restraints but have so been so touched by your generosity of spirit and kindness of heart. I hope you feel better soon because you have helped so many. I believe you’re an angel that has been sent to help all of us get through these issues. Take care of yourself and I hope you’re back to your old self soon! Nan

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@chinasmom and @nannette, thank you for having the courage to come out from behind the silent observer curtain. It’s true that many people choose to read only. The ratio is typically 100:1 readers to posters. Just think of all the great help and support that each of you in this group is providing to so many. A community is built of many people, and Katherine is proud that you are stepping up to greet new members, share experiences when someone has a question and to keep the warmth and intelligence of our Connect community thriving. You can’t have a community if everyone is silent. So I thank you for what you do too.

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@colleenyoung, just trying to carry on what you and, @katemn, katherine started. You are the pioneers and none of this would be here for us without you two. Im not sure how you do all of this.You give Information with a kind heart. You not only take care of our group but all groups, posts and new commers, and you do an amazing job! Im so thankful for you, katherine, and all mayo connect groups. You are loved and appreciated!
Becky

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@chinasmom

@colleenyoung, just trying to carry on what you and, @katemn, katherine started. You are the pioneers and none of this would be here for us without you two. Im not sure how you do all of this.You give Information with a kind heart. You not only take care of our group but all groups, posts and new commers, and you do an amazing job! Im so thankful for you, katherine, and all mayo connect groups. You are loved and appreciated!
Becky

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Ditto and thank you

Liked by chinasmom

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@nannette

@katemn…I have been a silent observer for a long time and don’t comment often because of time restraints but have so been so touched by your generosity of spirit and kindness of heart. I hope you feel better soon because you have helped so many. I believe you’re an angel that has been sent to help all of us get through these issues. Take care of yourself and I hope you’re back to your old self soon! Nan

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@collenyoung, that’s amazing that the ratio is 100 readers to one poster. And when I’m reading I always think how lucky we all are to have Katherine (and others) as the head cheerleader. I sure hope she gets back on her feet soon. The angel watching over all of us needs good thoughts and prayers. This is a wonderful support system. And thank you for all you do. Mayo is lucky to have you. Nan

Liked by chinasmom

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@nannette

@katemn…I have been a silent observer for a long time and don’t comment often because of time restraints but have so been so touched by your generosity of spirit and kindness of heart. I hope you feel better soon because you have helped so many. I believe you’re an angel that has been sent to help all of us get through these issues. Take care of yourself and I hope you’re back to your old self soon! Nan

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I think of and pray for Katherine every day. I know others are as well. She
knows and appreciates it. I want to thank all who contribute to keep our dialog
going. This is important and very helpful.
 

Liked by chinasmom

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