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Jo Ann K
@jkiemen

Posts: 372
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

@windwalker

@jkiemen Hello Jo Ann. How are you doing on your meds?

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@jkiemen , Jo Ann, you have probably already read that the meds can be rough when you first start taking them, but get easier after the second week. Do let your doctor know about the ringing in your ears. Do you know which of the three is causing it?

@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 went back Two days ago for a follow up with my doctor. I now recall something I forgot to ask. When the infectious disease doctor visited me in the hospital, he said something about my eyes needing to be checked. I don’t have an eye doctor appointment. Do you think I should call about this? Or is the eye doctor appointment later on in the treatment?

@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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Hi pink tower, if you are taking ethambutol, you should get eyes ckecked every 4 to 6 months. I had to come off this med because my vision was changing. Everything I looked at was really bright, even if it was 12 midnight. Once I came off this med, my vision hot normal again….

I have been taking the Big 3 for just over a week. The end of the first week I started to get very severe muscle aching the day after the medications. He had me retry just to make sure and it happened again. I think now I have to start over with one drug at a time but I think they are thinking it is Rifabutin that apparently can cause flulike symptoms. Has anyone had to slowly start back up on it and be able to tolerate it over time? I am already discouraged. I want my treatment to work and I don’t want my Doctors thinking I am a complainer. Does anyone see MD at Mayo in Rochester. I am going to try for an apt there but I know it will be out or Network for insurance.

I found this about another Nitric Oxide study for MAC to start in 2018. https://cysticfibrosisnewstoday.com/2017/04/17/cf-therapy-novoclem-nitric-oxide-releasing-biopolymer-attack-pathogens/

@jkiemen

I have been taking the Big 3 for just over a week. The end of the first week I started to get very severe muscle aching the day after the medications. He had me retry just to make sure and it happened again. I think now I have to start over with one drug at a time but I think they are thinking it is Rifabutin that apparently can cause flulike symptoms. Has anyone had to slowly start back up on it and be able to tolerate it over time? I am already discouraged. I want my treatment to work and I don’t want my Doctors thinking I am a complainer. Does anyone see MD at Mayo in Rochester. I am going to try for an apt there but I know it will be out or Network for insurance.

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@jkiemen Jo Ann, I had flu-like symptoms from Rifampin and was taken off it. Later I tried Rifabutin which I tolerated fine so that was added. Don’t worry about what your doctor thinks of you. The side effects are real and they are not always something to be powered through. They should not be ignored. While these meds are attacking the infection they can also attack the good things in your body. It’s a form of chemotherapy.

Is this a different study than the one out of Canada the names are different?
It’s sounding real good for all of us with its many uses on all the different bacteria we are dealing with.
Thanks for sharing!
Hope your doing better.
Shari

Liked by heathert

@jkiemen

I have been taking the Big 3 for just over a week. The end of the first week I started to get very severe muscle aching the day after the medications. He had me retry just to make sure and it happened again. I think now I have to start over with one drug at a time but I think they are thinking it is Rifabutin that apparently can cause flulike symptoms. Has anyone had to slowly start back up on it and be able to tolerate it over time? I am already discouraged. I want my treatment to work and I don’t want my Doctors thinking I am a complainer. Does anyone see MD at Mayo in Rochester. I am going to try for an apt there but I know it will be out or Network for insurance.

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I saw Dr Moua at the Mayo of Minn.
Dr Aksamit is the best and may be worth waiting to see him.
I just went in myself for a second opinion and didn’t get the whole work up.
My Infectiouse disease Doctor here said she would follow Dr Moua’s recommendation here in Minneapolis. My ID is in 20 minutes from me versus hour and half drive to Rochester.
How far are you from the Mayo?
With my case I was suppose to start out with IV’s.
It sounded like a easier option to have my Dr here follow the Mayo’s recommendations.
Shari
Hope this helps

I am about 5 hours from Mayo

@pfists

Is this a different study than the one out of Canada the names are different?
It’s sounding real good for all of us with its many uses on all the different bacteria we are dealing with.
Thanks for sharing!
Hope your doing better.
Shari

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Yes it looks like it is a new study

Liked by pfists

@jkiemen Thanks for that info, it all sounds very promising, yipeee.

@jkiemen

I have been taking the Big 3 for just over a week. The end of the first week I started to get very severe muscle aching the day after the medications. He had me retry just to make sure and it happened again. I think now I have to start over with one drug at a time but I think they are thinking it is Rifabutin that apparently can cause flulike symptoms. Has anyone had to slowly start back up on it and be able to tolerate it over time? I am already discouraged. I want my treatment to work and I don’t want my Doctors thinking I am a complainer. Does anyone see MD at Mayo in Rochester. I am going to try for an apt there but I know it will be out or Network for insurance.

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Thanks for this post. My doc wanted to give me something that could cause death!!! I refused to take. Now she is trying to have me take 2 antibiotics that can cause abnormal heartbeats… not doing that either…

@jkiemen

I have been taking the Big 3 for just over a week. The end of the first week I started to get very severe muscle aching the day after the medications. He had me retry just to make sure and it happened again. I think now I have to start over with one drug at a time but I think they are thinking it is Rifabutin that apparently can cause flulike symptoms. Has anyone had to slowly start back up on it and be able to tolerate it over time? I am already discouraged. I want my treatment to work and I don’t want my Doctors thinking I am a complainer. Does anyone see MD at Mayo in Rochester. I am going to try for an apt there but I know it will be out or Network for insurance.

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Don’t dispair, I have complained too. The docs don’t have to go thru these side effects, but you do. So keep complaining, it’s your health and peace of mind….

@jkiemen

I have been taking the Big 3 for just over a week. The end of the first week I started to get very severe muscle aching the day after the medications. He had me retry just to make sure and it happened again. I think now I have to start over with one drug at a time but I think they are thinking it is Rifabutin that apparently can cause flulike symptoms. Has anyone had to slowly start back up on it and be able to tolerate it over time? I am already discouraged. I want my treatment to work and I don’t want my Doctors thinking I am a complainer. Does anyone see MD at Mayo in Rochester. I am going to try for an apt there but I know it will be out or Network for insurance.

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Oh my gosh, which ones are they?

@jkiemen

I have been taking the Big 3 for just over a week. The end of the first week I started to get very severe muscle aching the day after the medications. He had me retry just to make sure and it happened again. I think now I have to start over with one drug at a time but I think they are thinking it is Rifabutin that apparently can cause flulike symptoms. Has anyone had to slowly start back up on it and be able to tolerate it over time? I am already discouraged. I want my treatment to work and I don’t want my Doctors thinking I am a complainer. Does anyone see MD at Mayo in Rochester. I am going to try for an apt there but I know it will be out or Network for insurance.

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Thank you, It sounds like they may switch rifabutin to rifampin and see how that goes. I hope that one is tolerable.

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