Why Dr has NOT prescribed me Rifampin for MAC/NTM?
Good Afternoon Village!
I was recently diagnosed with MAC I have a 3.7 CM hole in my lung. My infectious disease doctor started me on my medication about a month ago; ethambutol and azithromycin PLUS my doctor will be putting me on an inhaler that's medicated but it's very expensive so I have to wait until I'm on these meds for a few months (I'm not sure what that's called). He has not mentioned putting me on Rifampin or even mention that drug. I'm just curious what the reason would be since it seems everyone else is on all three of these and I'm on two of them. My doctor did tell me that my case is mild although I do have a hole in my lung?!?! My doctor does have extremely great reviews, and has said he treats a lot of Mac patients but I'm just curious if anyone else has only been put on a couple drugs and not all three? Like I said I'm supposed to get the inhaler too in a few months. If anyone has any information or similar experience please let me know. I appreciate it 😊!!! Thank you all-
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My understanding is that Rifampin is not necessary and that two of the three may be sufficient. Inhaled Arikayce is best for MAC if it is recommended for you in lieu of the oral medication. Good luck. (irene5)
If you are talking about Arikayce, it is $6000 per month. Register at Arikayce.com and they are a great help with insurance approval and have a generous co-pay assistance, like $75,000 or something.
Thank you so much! I think that that's the medication that he's going to put me on he said I had to be on the Oral for 6 months because it's so expensive and insurance won't cover it until you're treated for that many months. Anyway mine won't.
The Assistance Fund will cover Arikayce for you. It was 11,000$ 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)
From a study: "There was no significant difference between the three-drug regimen (macrolide, ethambutol, and rifampicin[/rifampin]) group and the two-drug regimen (macrolide and ethambutol) group in culture conversion." Whether you do 2 or 3 is up to the doctor, I guess.
Hi Irene5. I was put on the Big 3 when first diagnosed 4 years ago–nausea, lost weight, energy and appetite. Had to stop after 6 weeks. I've done airway clearance through nebbing saline, vest, etc. My current pulmonary doc is beginning co-partnering with an infection disease doc. I have an appointment in three weeks. My lungs have gotten much worse so hoping they will consider Arikayce without doing the big 3 again. Do you inhale it and is the sterilizing process the same as for cleaning the regular neb kits? For example, warm soapy water for 20 mins, rinse and steaming in microwave bag. Also do you have to have a special neb kit. When I did Tobramycin I had to use the Pari-LC. Thanks much.
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
Curious how long you've been MAC free after treatment?
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) 🙂
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!