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Bronchectasis, MAC and abdominal pain

Posted by lilianna @lilianna, Sep 20 12:22pm

I have bronchiectasis and have been also treated for MAC for the last 16 months. I am taking azithromycin, ethambutol and clofazimine. The last few months I have been experiencing abdominal pain, stomach or stomach area pain to the left or right. The last ten days it has been constant- stronger or weaker but all the time. I had liver and gallbladder US, upper GI-nothing, saw my ID doctor last Wednesday and she said that these meds are strong but she does not see me quitting the treatment. Has anybody experienecd this being on the MAC antibiotics and if yes what was done? It is not easy to live on anti spasm medication every day in addition to my regular MAC drugs. Any idea what to do.

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irene5 Irene Estes | @irene5 | Sep 22 2:48pm

That would be me!! Cured my MAC!! I had few side effects . I was in a clinical trial as the MAC oral meds were too difficult for me to tolerate well. Many people do well on the meds. I did not. Hence , the clinical trial with Arikayce which cured my MAC . irene5

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1 reply
laborday24 | @laborday24 | Sep 22 7:06pm
In reply to @irene5 "That would be me!! Cured my MAC!! I had few side effects . I was in..." + (show)
@irene5

That would be me!! Cured my MAC!! I had few side effects . I was in a clinical trial as the MAC oral meds were too difficult for me to tolerate well. Many people do well on the meds. I did not. Hence , the clinical trial with Arikayce which cured my MAC . irene5

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Really that gives me hope. I took antibiotics for two years drs resistant to azythromycin. Going to national Jewish health in November i don’t know for sure if that’s what they are going to do but I have read a lot about it. Worried about side effects and cost

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1 reply
irene5 Irene Estes | @irene5 | Sep 22 8:06pm
In reply to @laborday24 "Really that gives me hope. I took antibiotics for two years drs resistant to azythromycin. Going..." + (show)
@laborday24

Really that gives me hope. I took antibiotics for two years drs resistant to azythromycin. Going to national Jewish health in November i don’t know for sure if that’s what they are going to do but I have read a lot about it. Worried about side effects and cost

Jump to this post

Arikayce cost me 0$. It was like $11,000 a month, but with my insurance and the assistance fund, my cost was 0$. The assistance fund is the key to help with financial need. Irene5

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1 reply
laborday24 | @laborday24 | Sep 23 4:41pm
In reply to @irene5 "Arikayce cost me 0$. It was like $11,000 a month, but with my insurance and the..." + (show)
@irene5

Arikayce cost me 0$. It was like $11,000 a month, but with my insurance and the assistance fund, my cost was 0$. The assistance fund is the key to help with financial need. Irene5

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Wow. I hope if I have to go that route I can get help. How long were you on it

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1 reply
irene5 Irene Estes | @irene5 | Sep 23 10:00pm
In reply to @laborday24 "Wow. I hope if I have to go that route I can get help. How long..." + (show)
@laborday24

Wow. I hope if I have to go that route I can get help. How long were you on it

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I was on it for 18 months.Everyone is different . I was my ID doctor’s “guinea pig!” And that was ok because she is a smart and knowledgeable woman at UMASS, Worcester. She has other patients using Arikayce since she started with me. Irene5

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laborday24 | @laborday24 | Sep 24 7:11pm

Thank you so much for the information ❤️

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nana43 | @nana43 | Sep 25 6:07am

Hi!
I have had similar issues but not sure due to treatment. Have you been tested for bacteria and/or H Pylori infection in your stomach? It can be diagnosed through a simple stool sample.
Hope that helps! Dee

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1 reply
lilianna | @lilianna | Sep 26 8:57am
In reply to @nana43 "Hi! I have had similar issues but not sure due to treatment. Have you been tested..." + (show)
@nana43

Hi!
I have had similar issues but not sure due to treatment. Have you been tested for bacteria and/or H Pylori infection in your stomach? It can be diagnosed through a simple stool sample.
Hope that helps! Dee

Jump to this post

I had upper GI and biopsy was taken- no helicobacter pylori. I am seeing my gastro doctor next week.thank you for your good words.

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