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@fdixon63

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.

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Replies to "Hi Irene5. I was put on the Big 3 when first diagnosed 4 years ago--nausea, lost..."

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

I’ve been on the big 3 for three years and have also experienced weight loss (125 lbs down to 94.6 since last Fall), no appetite, and no energy. I saw one pulmonologist soon after diagnosis but then referred to one in network. I saw another pulmonologist (#3) and not one has mentioned seeing an infectious disease doctor until I read it here.