I can stop MAC antibiotics in June!

Posted by rits @rits, Mar 18 9:08am

Hi all, i just received my test results for the sputum sample I left at my pulmonologist’s on January 29. Acid fast bacilli is negative and no growth for 42 days! I have been taking azithromycin and ethambutol 3x per week since March (2019) and had my first negative two months later in June. I took Arikayce 3x per week from August to December. I hadn’t been tested since October and my doctor had reduced my azithromycin dosage back then so this news is a relief!

If this darn virus horror is over by June, I am considering a road trip to Tyler to see Dr Mcshane who has treated me throughout my MAC ordeal when she was here in Chicago. Due to colon issues, flying would be a tremendous challenge.

It’s something to look forward to while I’m beating myself up for spending the last few days lying around. Except for walking the dog 3x a day, I’m staying home. You too? I have a thousand chores to do around here but am so lazy! Can’t get off my butt! I hope everyone is doing well. Thanks for all the support. Rita

Im just starting on this journey. Sounds like you only took 2 to start and not the Rifampin? But you still had good results. Why do they sometimes choose a 3 day regimen and sometimes a 7 day regimen ?

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@rits That is wonderful news. I am on the same “cocktail” as you. It has had to be tweaked a few times, but apparently there is a light at the end of this very long tunnel. I couldn’t be more thrilled for you. Congratulations! Irene5

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@joanden

Im just starting on this journey. Sounds like you only took 2 to start and not the Rifampin? But you still had good results. Why do they sometimes choose a 3 day regimen and sometimes a 7 day regimen ?

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@joanden I started on this journey in 2016. I was diagnosed a bit earlier. In the beginning I was on all three meds and seven days a week. Since I had lost 18% of my body weight, I struggled a great deal with that treatment. It was switched to the three day, but I still struggled. For me and for many others Rifampin seems to be the culprit. Studies have shown that there is little difference in results if you eliminate one. My understanding, and I am not a doctor, is that if you can tolerate two and then add Arikayce there is a higher “cure” rate. MAC can always come back, but after reading what @rits posted today I am encouraged as well we all should be by her positive result – or I should say “negative” result really:). irene5

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@joanden

Im just starting on this journey. Sounds like you only took 2 to start and not the Rifampin? But you still had good results. Why do they sometimes choose a 3 day regimen and sometimes a 7 day regimen ?

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I lasted two doses of rifampin before having a very bad reaction. There are ongoing studies designed to show whether rifampin is necessary. My doctor told me that it was too late for her to enroll me in the study but she was so sure if the outcome that she did not substitute a third drug. Until the studies conclude whether rifampin is required, the protocol calls for three drugs.

I think most patients start with 3x per week but if that doesn't work after a period of time, we are moved to 7 days. Another drug like amakacin or more recently Arikayce may be added.

Good luck to you. I hope the drugs work quickly for you.

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@rits Wonderful news, something we can all appreciate right now . I am so happy for you.

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@rits This is great news! I haven't been on the site for awhile, but you're the first person I've heard of who reports clear having used the same protocol as me. I too am MAC free after 3 sputums tested within a 5 month period. I initially was on the Big 3 in 2018, stopped for a few months, then started again. Added Aricayce inhaled for 3 months. Eventually stopped the Rifampin, but remain on Azithromycin and Ethambutol. The one thing I hope to continue is nebulizing 7% saline as I have never had a problem with it. Especially now with Covid, I can't help but think its cleansing my lungs! Follow up w doc in a month and we'll see what's next med-wise. It is possible to convert to negative and I'm so pleased to hear your good news!

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@rits Congrats Rita!! I will add you to my 'mac free' list. (you too Margie) Yes, I really have one. Those that go on the list serve as a beacon of hope for others. I hope that you will continue to stay on with our group, we need to see positive results. I remember when you first came onboard with Connect, your struggles were many. You have come a long way baby! I hope that you are celebrating your victory. Great BIG hug! -Terri

Liked by rits

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@joanden

Im just starting on this journey. Sounds like you only took 2 to start and not the Rifampin? But you still had good results. Why do they sometimes choose a 3 day regimen and sometimes a 7 day regimen ?

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@joanden Hello Joan, and welcome to our group. Can you share more about yourself? How are you feeling?

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@irene5

@joanden I started on this journey in 2016. I was diagnosed a bit earlier. In the beginning I was on all three meds and seven days a week. Since I had lost 18% of my body weight, I struggled a great deal with that treatment. It was switched to the three day, but I still struggled. For me and for many others Rifampin seems to be the culprit. Studies have shown that there is little difference in results if you eliminate one. My understanding, and I am not a doctor, is that if you can tolerate two and then add Arikayce there is a higher “cure” rate. MAC can always come back, but after reading what @rits posted today I am encouraged as well we all should be by her positive result – or I should say “negative” result really:). irene5

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@irene5 We are going to get you there one of these days!

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@joanden

Im just starting on this journey. Sounds like you only took 2 to start and not the Rifampin? But you still had good results. Why do they sometimes choose a 3 day regimen and sometimes a 7 day regimen ?

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Joan, you can click on my photo icon to read my succesful treatment plan. There are other possible options if it agrees with the suseptibility test. Please feel free to ask questions about mac or on how to navigate this site.

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@windwalker

@irene5 We are going to get you there one of these days!

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Merci buckets!

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@margiebanks

@rits This is great news! I haven't been on the site for awhile, but you're the first person I've heard of who reports clear having used the same protocol as me. I too am MAC free after 3 sputums tested within a 5 month period. I initially was on the Big 3 in 2018, stopped for a few months, then started again. Added Aricayce inhaled for 3 months. Eventually stopped the Rifampin, but remain on Azithromycin and Ethambutol. The one thing I hope to continue is nebulizing 7% saline as I have never had a problem with it. Especially now with Covid, I can't help but think its cleansing my lungs! Follow up w doc in a month and we'll see what's next med-wise. It is possible to convert to negative and I'm so pleased to hear your good news!

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@margiebanks Hey Margie, when did you test negative?

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@ling123 Ling!!! Where are you? I have been thinking of you a lot lately because I know you have family in China. Two things: how have you been?, and has any of your friends and family in China (or here) been affected by the corona virus? I sure hope not. Stay safe my friend.

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I need to send a sputum sample to Dr McShane at Tyler. They sent me a "cup" with my info on it and a tin can which has a plastic biohazard container inside. The instructions are to take it to the post office and pay $3 to send it. I may be able to avoid the post office because we have a receiving room in my building and I have sent Fed Ex from there. I'm pretty sure I can send it through just about any carrier through them. I'm reluctant to even go to the receiving room during this plague but I need to have my sputum checked for what Dr. McShane calls "organisms".

I believe some (many) of you have sent samples to Mayo or elsewhere. Do you just send the tin can? Or do I need a US mail or Fed Ex envelope?

Any advice would be greatly appreciated. Thank you.

20200403_142138

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I sent
My sputum sample via USPS to NJH. They had given me the containers you mentioned but also a mailing envelope. I suppose any sturdy mailing envelope would be just fine. Best wishes!

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