Why Dr has NOT prescribed me Rifampin for MAC/NTM?

That's great to be over a year without MAC! Sorry to hear there's something new though, and sure hope you are feeling better. I'm in month 6 of Azithromycin and Ethambutol, and Arikayce. Just hoping for a good outcome, and I'm always interested how others have done after treatment. God bless you, and we'll keep on praying!

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The Assistance Fund will cover Arikayce for you. It was 11,000$ a month for me - all taken care of through the Assistance Fund and my insurance. The Arikayce people will tell you about it when the time comes. The reason you have to be on the oral medication first ( 2 of the 3) is so you can go to the next level (Arikayce) . Arikayce is for people who struggle with the oral medication and without improvement from MAC. I had little to no side effects from Arikayce. It is time consuming because you have to sterilize the equipment afterwards but well worth it in my opinion. ( Irene5)

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I started Arikayce right away because I have a lung cavity with MAC. I was quoted the same cost and pay nothing because of the Assistance program. Now on it for 12 months and have tested negative for the last 10. Also on the Big 3. So it appears to work.

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It has been over a year without MAC. I was diagnosed in 2015/16 but had it I’m sure long before that. I started the Big 3 in July of 16. I was on again off again Finnegan till 2019/20 when I started Arikayce until 1/2022. I had two bronchs on 2022 - one in June and a robotic diagnostic one with biopsy in August. Both showed no more MAC after the “long wait” period. Unfortunately, I have a new gift (invasive aspergillosis) and have been quite sick with that since 8/2022 when I spent half of August in the hospital. I thought the good God had taught me enough patience with MAC as I used to be a type A personality - apparently He must want me to learn more. But the MAC is gone thanks to Arikayce . ( and of course lots of prayer) 🙂

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I am about 4 1/2 months into treatment with the Big 3. MAI along with Aspergillis Niger were discovered 8/2022. Treatment started 11/22. My most recent sputum showed Aspergillis Fumigatus, still waiting on the AFB. My doctor doesn’t seem concerned about the Aspergillis, but I certainly am based on what I’ve read. Did Aspergillis ever show up for you previously, or just after you MAC treatment was complete?

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Aspergillosis fumagatos showed up on a biopsy 8/2/2022 after a “minimally” invasive robotic surgery. Unfortunately, my lungs were so fragile I had a pneumothorax after surgery and a chest hemorrhage after they took the tube out. I was at UMASS for two weeks. I was on Vfend - switched to Cresemba and now back on Vfend. Insurance won’t cover the Cresemba in 2023. They covered it in 2022. - so crazy. Not a fan of all this. They discovered MAC was gone prior to this (6/2022 with a bronchoscopy). Apparently it is not uncommon to get rid of one thing only to replace it with something else. The aspergillosis is apparently easier to treat than MAC. My diagnosis was invasive aspergillosis with pneumonia. The joy of it all.

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I doubt they will have you start the Big 3 again. I mean they might but hopefully not. I’m glad your pulmonologist and ID doctor are in sync. That’s how it should be!! So I am unable to do any of the nebulizer stuff or a vest for many reasons - mostly because I am too fragile (pronounced fra Jill ay ) like in A Christmas Story! Lol. The Arikayce is a different process . It has a kajillian steps but it’s like riding a bike. Once you’ve got it - you’ve got it. And you can call your Arikayce person (you will be given an Arikayce coordinator) at any time. You can also call Panther Pharnacy with questions as well. You are given a nurse who goes over it with you step by step the first time. The sterilization involves a particular kind of soap and you can use only distilled water for the process. Each piece has to be rinsed , washed, sterilized and then dried on an Arikayce mat and covered with an Arikayce towel!:). I counted the seconds for each piece and used Alexa to tell me when five minutes was up. Arikayce is inhaled using their equipment which is yours to keep. I think each medicine box contains a month of vials that you will keep in the refrigerator. It comes in a huge refrigerated box that you return each time. UPS comes and collects it. Easy peasy! It also has equipment to change out when necessary. It becomes easy - just time consuming, and they supply you with a journal to take notes. You need to do it when it is convenient for you. I did it at the end of every day when my work was done. For me that was at 8:30 or 9. I told my kids not to call during that time as I was doing my treatment. The only issue I had was after I had been doing Arikayce for a long time we got a GSD puppy so I had to put Simba in his crate while I did the treatment as he was a big distraction and very interested in what the momma was doing. I’m 73 years old and if I can do it you can do it. I don’t learn as quickly as I used to back in the day. Long story short - the Arikayce got rid of my MAC. It targets your lungs and bypasses everything the Big 3 hit on the way to your lungs. Wishing you only good things on your journey. Irene

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Thanks for sharing your story, you have a great attitude! One more question, after having a bronchoscopy in June 22 why did they feel the need to do the robotic guided biopsy in August 22?

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Irene, we are having parallel experiences. After years of MAC, big 3, amikacin, arikayce, etc, I too was diagnosed with a fungal infection in 2022 after developing systems in March. I started voriconizole in November. Dr's at NJH want to preform lobectomy this year. I'm working on a 3rd opinion now. Also developed some recent tachycardia so a Cardiologist is scheduled in May. I'm trying to hold off until after May when I turn 65 and get Medicare. I also had a GSD for 14 years until last month, father time caught up to her. I miss her.

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