1. < MAC & Bronchiectasis

Have to start the big three

Posted by Jo Ann K @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

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Jo Ann K | @jkiemen | Nov 29, 2017
In reply to @jkiemen "Thank you. I had my baseline eye exam today, pick up the meds tomorrow and then..." + (show)
@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?

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I will look online for them and get some ginger tea

REPLY
pinktower | @pinktower | Nov 29, 2017
In reply to @colleenyoung "Hi JoAnn, I know this is a scary time. I'm tagging a few MAC members who..." + (show)
@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?

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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?

REPLY
Jo Ann K | @jkiemen | Nov 29, 2017
In reply to @colleenyoung "Hi JoAnn, I know this is a scary time. I'm tagging a few MAC members who..." + (show)
@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?

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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

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 29, 2017
In reply to @heathert "Hi @jkiemen I have been on them for 3 years and for me it got better..." + (show)
@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

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

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 29, 2017
In reply to @jenblalock "Hi Joann, I've been on the big 3 plus some others. I was lucky and did..." + (show)
@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.

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@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!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 29, 2017
In reply to @colleenyoung "Hi JoAnn, I know this is a scary time. I'm tagging a few MAC members who..." + (show)
@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

@pinktower, Hello there, and welcome to our forum. Do you have a first name? First off, I am sending you a big cyber hug because I know how sufferable it is to have Crohn's. My husband, his siblings, and his daughter have that. My step-daughter went on Humera for awhile; that seemed to help. It went away for several years until a stressful job brought it back on. I have a feeling that all auto-immune diseases make us suseptible to MAC. As far as your test results go, it takes 4-6 weeks to grow MAC. So, you need to give that more time. In dealing with Crohn's, I would seek out a teaching medical institution like the Mayo Clinic, Johns Hopkins, NIH, etc. I just spoke to my husband about your situation. He reminded me that when he was put on antibiotics, his Crohn's cleared up. He also said that his diet had a lot to do with it getting better. He found that wheat, barley, and oats (including oatmeal) would bring a flare-up on. You may have a food sensitivity as well. Maybe try a food diary to document what you have eaten and the effects afterwards. I myself have a gluten sensitivity. Every time I eat breads, pasta, and the like; I tend to get a lot of phlegm build-up in my lungs. Please keep us posted on how you are doing. Also, check to see if Connect has a Crohns support group as well. I hope you find some resolve soon.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 29, 2017
In reply to @jkiemen "Thank you. I had my baseline eye exam today, pick up the meds tomorrow and then..." + (show)
@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

@jkiemen, I am sorry to hear that you have advanced to needing the BIG 3 antibiotics. Many who have travelled this road before you have suggested that you start out by taking one med alone for the first week, then introduce the second med along with it the next, and so on. That way; in the event your body cannot tolerate it, you can pinpoint exactly which one is not agreeing with you. There is also times of the day and around meals that affect how well you can tolerate the meds. I used to have the schedule that worked for our previos Mentor, @kateman, that had successfully scheduled her meds to where she could tolerate them. I am sure someone has a link to that thread. I have a brand new computer and am losing my AOL, so I do not have access to my old saved file cabinet. I will try to recover them for you. But, hopefully others here will post them. Wishing you the best, Terri

REPLY
heathert | @heathert | Nov 29, 2017
In reply to @heathert "Hi @jkiemen I have been on them for 3 years and for me it got better..." + (show)
@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

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Thanks @windwalker yes it can get tough, but thank goodness we have each other!

REPLY
Jo Ann K | @jkiemen | Nov 29, 2017

Any tips for tolerating the medications are really appreciated. I am trying to figure out how this is going to work along with a full time job, if I should take them in the evening etc. JoAnn

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 29, 2017
In reply to @tdrell "Hi Jkiemen, NJH said I would not need antibiotics since my issue was aspirating stomach contents..." + (show)
@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

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@tdrell, Hi Terri. I am SO glad you are back! Lots of hugs to you.

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