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

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Jen_b | @jenblalock | Dec 11, 2017
In reply to @jkiemen "I have been taking the Big 3 for just over a week. The end of the..." + (show)
@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.

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pfists | @pfists | Dec 11, 2017

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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1 reply
pfists | @pfists | Dec 11, 2017
In reply to @jkiemen "I have been taking the Big 3 for just over a week. The end of the..." + (show)
@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.

Jump to this post

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

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Jo Ann K | @jkiemen | Dec 11, 2017

I am about 5 hours from Mayo

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1 reply
Jo Ann K | @jkiemen | Dec 11, 2017
In reply to @pfists "Is this a different study than the one out of Canada the names are different? It's..." + (show)
@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

Jump to this post

Yes it looks like it is a new study

REPLY
Sophie | @sophie1019 | Dec 11, 2017
In reply to @jkiemen "I have been taking the Big 3 for just over a week. The end of the..." + (show)
@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.

Jump to this post

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...

REPLY
Sophie | @sophie1019 | Dec 11, 2017
In reply to @jkiemen "I have been taking the Big 3 for just over a week. The end of the..." + (show)
@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.

Jump to this post

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....

REPLY
Jo Ann K | @jkiemen | Dec 11, 2017
In reply to @jkiemen "I have been taking the Big 3 for just over a week. The end of the..." + (show)
@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.

Jump to this post

Oh my gosh, which ones are they?

REPLY
Jo Ann K | @jkiemen | Dec 11, 2017
In reply to @jkiemen "I have been taking the Big 3 for just over a week. The end of the..." + (show)
@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.

Jump to this post

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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