Connect
← Return to Why Dr has NOT prescribed me Rifampin for MAC/NTM?
Discussion
Why Dr has NOT prescribed me Rifampin for MAC/NTM?
MAC & Bronchiectasis | Last Active: Jun 22, 2023 | Replies (25)Comment receiving replies
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)
Replies to "The Assistance Fund will cover Arikayce for you. It was 11,000$ a month for me -..."
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.
Connect
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.