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Jo Ann K
@jkiemen

Posts: 357
Joined: Jun 23, 2017

Have to start the big three

Posted by @jkiemen, Nov 28, 2017

I just got the results of my CT done yesterday. There are now enough changes that I am being asked to start the Big three. I have an eye exam tomorrow and then I guess I start. I really don’t cough much mostly feel like I have junk in the back of my throat only. Sputum inductions have not been successful so it will be hard to see if there is any improvement. I am really sad that I am advanced now to this stage. Many of you have already been there and beyond. Please share any advice on tolerating the medications.
JoAnn K

REPLY

Hi JoAnn,
I know this is a scary time. I’m tagging a few MAC members who have taken the “big 3” antibiotics to join this discussion. @cila @sophie1019 @kaystrand @pamelasc1 @lindam272 @Paula_MAC2007 @tdrell @heathert @kwilbur, JoAnn would love to hear from you.

JoAnn, Here are few discussions to review while we wait for members to chime in:
– Has anyone been on azithromycin, rifampin, and clofazomine cocktail? https://connect.mayoclinic.org/discussion/has-anyone-been-on-azithromycin-rifampin-and-clofazomine-cocktail/
– MAC antibiotics and side effects https://connect.mayoclinic.org/discussion/mac-antibiotics-and-side-effects/
– Update On Treatment of MAC https://connect.mayoclinic.org/discussion/update-on-treatment-of-mac/

Has you doctor recommended probiotics?

Hi Jkiemen, NJH said I would not need antibiotics since my issue was aspirating stomach contents which contain MAC from our Water supply vs lung infection. So I have no experience with the antibiotics.
You need to have hearing tested also prior meds I believe.
Have you watched National Jewish Health series of videos on NTM from 2016 which have specific tips on taking the meds.?
Tdrell

Hi Joann, I’ve been on the big 3 plus some others. I was lucky and did not have bad side effects. Well, I should say that the Rifampin did not agree with me so they took me off that and put me on Clofazimine. Later I tried Rifabutin which I tolerated well so that was added. The meds did make me tired early in the day and I changed my taste buds so that foods didn’t taste the same and my appetite was less but for me that wasn’t a bad thing. For once in my life I didn’t have to watch everything I ate or gain weight. 🙂 I was on the meds for 15 months and have been off since April of this year. They did eradicate the NTM so treatment was successful.

They should start each med separately adding the new one each week. That way if you don’t tolerate one they’ll know which one it is. You’ll get your blood tested and eyes checked while on the meds. The doctors should explain all this to you. Ethambutol can affect the eyes and all the meds can affect liver and kidneys. Also if you end up on Amikacin you’ll want to get your ears checked regularly.

Best to you and let us know how it goes.

@jenblalock

Hi Joann, I’ve been on the big 3 plus some others. I was lucky and did not have bad side effects. Well, I should say that the Rifampin did not agree with me so they took me off that and put me on Clofazimine. Later I tried Rifabutin which I tolerated well so that was added. The meds did make me tired early in the day and I changed my taste buds so that foods didn’t taste the same and my appetite was less but for me that wasn’t a bad thing. For once in my life I didn’t have to watch everything I ate or gain weight. 🙂 I was on the meds for 15 months and have been off since April of this year. They did eradicate the NTM so treatment was successful.

They should start each med separately adding the new one each week. That way if you don’t tolerate one they’ll know which one it is. You’ll get your blood tested and eyes checked while on the meds. The doctors should explain all this to you. Ethambutol can affect the eyes and all the meds can affect liver and kidneys. Also if you end up on Amikacin you’ll want to get your ears checked regularly.

Best to you and let us know how it goes.

Jump to this post

Thank you . It is good to hear some not so scary responses. I get my baseline eye exam today and then will be starting. Jo Ann K

@tdrell

Hi Jkiemen, NJH said I would not need antibiotics since my issue was aspirating stomach contents which contain MAC from our Water supply vs lung infection. So I have no experience with the antibiotics.
You need to have hearing tested also prior meds I believe.
Have you watched National Jewish Health series of videos on NTM from 2016 which have specific tips on taking the meds.?
Tdrell

Jump to this post

I have not watched it but I will now.

@jenblalock

Hi Joann, I’ve been on the big 3 plus some others. I was lucky and did not have bad side effects. Well, I should say that the Rifampin did not agree with me so they took me off that and put me on Clofazimine. Later I tried Rifabutin which I tolerated well so that was added. The meds did make me tired early in the day and I changed my taste buds so that foods didn’t taste the same and my appetite was less but for me that wasn’t a bad thing. For once in my life I didn’t have to watch everything I ate or gain weight. 🙂 I was on the meds for 15 months and have been off since April of this year. They did eradicate the NTM so treatment was successful.

They should start each med separately adding the new one each week. That way if you don’t tolerate one they’ll know which one it is. You’ll get your blood tested and eyes checked while on the meds. The doctors should explain all this to you. Ethambutol can affect the eyes and all the meds can affect liver and kidneys. Also if you end up on Amikacin you’ll want to get your ears checked regularly.

Best to you and let us know how it goes.

Jump to this post

@jkiemen – Hi, Jo Ann, I agree with the above. I was on rifampin, ethambutol and azithromyacin and did pretty well for the first 7 months until I noticed I was experiencing confusion which is a side effect of rifampin. I went off the meds half way through the 14 months my doc wanted me to take them. I’ve had 4 clean sputum cultures in the last 12 months and am waiting for my latest one to come back sometime in the next couple of weeks. While on the meds, I had my blood drawn every month to check liver and kidney functions and had eye exams every 6 weeks or so for the first 6 months, then was going on quarterly but went off the meds so stopped. I had my hearing checked for a baseline and then went every 3 months for checkups. Everyone’s body reacts differently so I guess the main thing is to not expect to have horrible side effects but to go into it with a positive attitude – no fear! Keep us posted on how you are doing. Linda

Hi @jkiemen I have been on them for 3 years and for me it got better after the first 6 months to a year. At first I had nausea, I sucked on ginger lollies constantly and drank ginger and licorice tea which helped alot. I also had gerd/heartburn so took omeprazole for that which keeps it at bay. I also felt flu like for some time. So although there were symptoms I eventually had them sorted and after a year on them felt alot better. Everyone is different so I hope you do really well on them.
Take Care
Heather

Thank you. I had my baseline eye exam today, pick up the meds tomorrow and then I guess I will start them. I will pick up the ginger lollies. Where did you find them?

@jenblalock

Hi Joann, I’ve been on the big 3 plus some others. I was lucky and did not have bad side effects. Well, I should say that the Rifampin did not agree with me so they took me off that and put me on Clofazimine. Later I tried Rifabutin which I tolerated well so that was added. The meds did make me tired early in the day and I changed my taste buds so that foods didn’t taste the same and my appetite was less but for me that wasn’t a bad thing. For once in my life I didn’t have to watch everything I ate or gain weight. 🙂 I was on the meds for 15 months and have been off since April of this year. They did eradicate the NTM so treatment was successful.

They should start each med separately adding the new one each week. That way if you don’t tolerate one they’ll know which one it is. You’ll get your blood tested and eyes checked while on the meds. The doctors should explain all this to you. Ethambutol can affect the eyes and all the meds can affect liver and kidneys. Also if you end up on Amikacin you’ll want to get your ears checked regularly.

Best to you and let us know how it goes.

Jump to this post

Thanks. I am glad I am hearing some not so bad information. Will keep you all posted and probably ask for more advise along the way.

@jkiemen

Thank you. I had my baseline eye exam today, pick up the meds tomorrow and then I guess I will start them. I will pick up the ginger lollies. Where did you find them?

Jump to this post

Hi @jkiemen I got them from the chemist and online but I live in NZ.

@jkiemen

Thank you. I had my baseline eye exam today, pick up the meds tomorrow and then I guess I will start them. I will pick up the ginger lollies. Where did you find them?

Jump to this post

I will look online for them and get some ginger tea

Liked by heathert

@colleenyoung

Hi JoAnn,
I know this is a scary time. I’m tagging a few MAC members who have taken the “big 3” antibiotics to join this discussion. @cila @sophie1019 @kaystrand @pamelasc1 @lindam272 @Paula_MAC2007 @tdrell @heathert @kwilbur, JoAnn would love to hear from you.

JoAnn, Here are few discussions to review while we wait for members to chime in:
– Has anyone been on azithromycin, rifampin, and clofazomine cocktail? https://connect.mayoclinic.org/discussion/has-anyone-been-on-azithromycin-rifampin-and-clofazomine-cocktail/
– MAC antibiotics and side effects https://connect.mayoclinic.org/discussion/mac-antibiotics-and-side-effects/
– Update On Treatment of MAC https://connect.mayoclinic.org/discussion/update-on-treatment-of-mac/

Has you doctor recommended probiotics?

Jump to this post

I had my bronchoscopy 14 days ago and have been told that the results are not narrowed down enough yet. I am so scared I’m going to be told I have MAC; I would not think there are a whole lot of germs that cannot be identified after 14 days.
My problem is severe Crohn’s disease. I have night sweats, fever, constant diareah, weight loss and severe abdominal pain. My GI was ready to start me on Remicade, and then my lung CT showed nodularity, which meant I couldn’t get my Remicade.
I would love to know if anyone else on here has severe Crohn’s disease?
I cannot imagine how I could tolerate antibiotics because I cannot eat except what is absolutely necessary to survive – and then I have to live with the pain to digest it.
Please. Does anyone else on here have severe Crohn’s?

@colleenyoung

Hi JoAnn,
I know this is a scary time. I’m tagging a few MAC members who have taken the “big 3” antibiotics to join this discussion. @cila @sophie1019 @kaystrand @pamelasc1 @lindam272 @Paula_MAC2007 @tdrell @heathert @kwilbur, JoAnn would love to hear from you.

JoAnn, Here are few discussions to review while we wait for members to chime in:
– Has anyone been on azithromycin, rifampin, and clofazomine cocktail? https://connect.mayoclinic.org/discussion/has-anyone-been-on-azithromycin-rifampin-and-clofazomine-cocktail/
– MAC antibiotics and side effects https://connect.mayoclinic.org/discussion/mac-antibiotics-and-side-effects/
– Update On Treatment of MAC https://connect.mayoclinic.org/discussion/update-on-treatment-of-mac/

Has you doctor recommended probiotics?

Jump to this post

I don’t have Crohn’s but if your bronchoscopy show MAC then maybe you would quality for the Nitric Oxide study being done in Vancouver. JoAnn K

@heathert

Hi @jkiemen I have been on them for 3 years and for me it got better after the first 6 months to a year. At first I had nausea, I sucked on ginger lollies constantly and drank ginger and licorice tea which helped alot. I also had gerd/heartburn so took omeprazole for that which keeps it at bay. I also felt flu like for some time. So although there were symptoms I eventually had them sorted and after a year on them felt alot better. Everyone is different so I hope you do really well on them.
Take Care
Heather

Jump to this post

@heathert, Great suggestions Heather. Gosh, the things we have to go through to get through life sometimes…. I am just sayin’.

Liked by heathert

@jenblalock

Hi Joann, I’ve been on the big 3 plus some others. I was lucky and did not have bad side effects. Well, I should say that the Rifampin did not agree with me so they took me off that and put me on Clofazimine. Later I tried Rifabutin which I tolerated well so that was added. The meds did make me tired early in the day and I changed my taste buds so that foods didn’t taste the same and my appetite was less but for me that wasn’t a bad thing. For once in my life I didn’t have to watch everything I ate or gain weight. 🙂 I was on the meds for 15 months and have been off since April of this year. They did eradicate the NTM so treatment was successful.

They should start each med separately adding the new one each week. That way if you don’t tolerate one they’ll know which one it is. You’ll get your blood tested and eyes checked while on the meds. The doctors should explain all this to you. Ethambutol can affect the eyes and all the meds can affect liver and kidneys. Also if you end up on Amikacin you’ll want to get your ears checked regularly.

Best to you and let us know how it goes.

Jump to this post

@jenblalock, Hi Jen. It is good to hear success stories from those who have taken the BIG 3. I hope that you will stay with us even though you are not infected. Your story can inspire others. I am glad to know that that worked for you. – Hugs!

Liked by heathert, Jen_b

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