1. < MAC & Bronchiectasis

Should I take Big 3 + inhaled ARIKAYCE

Posted by helen1000 @helen1000, Jun 5 11:21am

I am currently 48 year old, I have NTM- MAC with a couple of cavities (1.3 cm * 2.2cm , and 0.5cm* 0.5cm), the big one increased in size from last year ( it was 1.9cm * 1.2cm) and this small one (0.5cm* 0.5cm) is new. Also I have nodules in both lungs widespread. I am using Saline 7% but I don't know whether it helps with cavity. Also my sputum test turned from negative to positive this year. My doctor is concerned that the cavity will keep increasing in size and quantity so he wants me to start antibiotics as soon as possible. He is a great doctor.

I am deeply concerned about the side effects of big 3 + inhaled Arikayce, that my doctor is going to prescribe for me.

Do you think these antibiotics will help with MAC? I truly doubt about it. I did a lot of research, MCA is too hard to cure and it may come back. Not to mention the side effects... I also studies Sue's cases and she is doing really great with Saline 7% without extra antibiotics.

My doctor ( NY) also says they are going to study phage therapy next year. ( I shared my story about phage in Belgium in this forum ) But he says that any new type of antibiotics is not in the pipeline yet. So I am thinking maybe I should take antibiotics. He thinks maybe I can tolerate the medication because of my relatively young age. I don't have other diseases so far.

Do you have any suggestion for me? I am thinking of just closely monitoring with CT every three months. Really struggle with my decision.

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

helen1000 | @helen1000 | Jun 13 10:13pm

Hey guys, how many of you go through a lung resection for cavity? Is there any success case after the surgery?
I see a couple of success stories for the lung resection and they are MAC free for quite a while. per below I think in my case, I have to go through both medication and resection for sure. No matter how challenging it is, I have to make a decision eventually. It is better to treat early than later!

https://www.inspire.com/groups/american-lung-association-lung-disease/discussion/mac-success-storys/
Also find some takeaway from below link about liver protection like vitamin B 🙂

https://www.inspire.com/groups/american-lung-association-lung-disease/discussion/are-there-success-stories-for-mac-treatment/
REPLY
pacathy | @pacathy | Jun 14 6:00am
In reply to @helen1000 "Is it minimally invasive? If so, it should be okay. The key is to find the..." + (show)
@helen1000

Is it minimally invasive? If so, it should be okay. The key is to find the best doctor. But if you feel good , I think taking a conservative approach is always the best. 🙏 To be honest too aggressive may not do anything good..

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She has increasing cavities.

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irene5 Irene Estes | @irene5 | Jun 14 6:53am

@helen1000 I just saw your post and guess you have already made your decision. I wouldn’t wait and see given what is already on your CT scan. The Big 3 plus Arikayce ( in my opinion) will knock out your MAC. You really only need two of the Big 3 ( no Rifampin). Arikayce cured my MAC . Arikayce is an expensive med - mine would have been $11,000 per month out of pocket. I’m no Kardasian so I got it free as a clinical trial . The Assistance Fund is great at helping with that for ordinary humans!:) Wishing you well. Irene5

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suzyqueue | @suzyqueue | Jun 15 7:39am

With cavities, the Arikayce can shrink them but mac is still difficult to convert to negative. I've been on it 5 years. I also have been on the big 3. Thankfully I've been on the Rifabutin as one of the 3. The Azithromycin is known to become resistant as it did for me. Big 3 and Arikayce has kept me stable and shrunk a 10 cm cavity to a 4.

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2 replies
reneemc | @reneemc | Jun 15 7:54am
In reply to @suzyqueue "With cavities, the Arikayce can shrink them but mac is still difficult to convert to negative...." + (show)
@suzyqueue

With cavities, the Arikayce can shrink them but mac is still difficult to convert to negative. I've been on it 5 years. I also have been on the big 3. Thankfully I've been on the Rifabutin as one of the 3. The Azithromycin is known to become resistant as it did for me. Big 3 and Arikayce has kept me stable and shrunk a 10 cm cavity to a 4.

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Suzy, you still test positive for MAC after being on Arikayce for five years?

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1 reply
1fancydancer | @1fancydancer | Jun 15 8:42am

I had MAC I think in 2017. Can't remember what I took to get rid of it. But it worked and never had it since. I do take 500 mg of Azithromyzin 3x per week for the rest of my life to keep MAC away. Thus far, it has worked. I am 68 years old and an avid gardener. I ask Dr if I need to give up my yardwork and he said NO. Hang in there.

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1 reply
suzyqueue | @suzyqueue | Jun 15 3:13pm
In reply to @reneemc "Suzy, you still test positive for MAC after being on Arikayce for five years?" + (show)
@reneemc

Suzy, you still test positive for MAC after being on Arikayce for five years?

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Yep. Crazy huh?

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1 reply
helen1000 | @helen1000 | Jun 16 10:15am
In reply to @suzyqueue "With cavities, the Arikayce can shrink them but mac is still difficult to convert to negative...." + (show)
@suzyqueue

With cavities, the Arikayce can shrink them but mac is still difficult to convert to negative. I've been on it 5 years. I also have been on the big 3. Thankfully I've been on the Rifabutin as one of the 3. The Azithromycin is known to become resistant as it did for me. Big 3 and Arikayce has kept me stable and shrunk a 10 cm cavity to a 4.

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Are you guys ever applying for disability insurance, during the treatment period? I am not sure whether I can still work with the medication and surgery going on.
Plus I think I have to be unemployed for 12 months to apply for it. I also heard MAC alone will not make it. Any input? Thanks!

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1 reply
helen1000 | @helen1000 | Jun 16 10:37am

Effect of oestrogen on Mycobacterium avium complex pulmonary infection in mice

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1906003/

Here is an article about how oestrogen affect MAC. As MAC happens on women after menopause period, I am thinking maybe eating oestrogen will help? Any input? Thanks,

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helen1000 | @helen1000 | Jun 16 7:41pm
In reply to @suzyqueue "Yep. Crazy huh?" + (show)
@suzyqueue

Yep. Crazy huh?

Jump to this post

Hi Suzyqueue
Will you consider resection of your cavity?

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