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Remission: When do you consider yourself in remission from MAC?
Okay, so let’s say you’ve been appointed to proclaim from on high how many days, weeks, months or years of being symptom free must come and go before you may, without fear of making a fool of yourself, declare yourself to be “cured”
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thanks for your note. They are saying that my co-pay for this is almost 3,000 per month. Too rich for my blood!
@lweirdo1 I have been on Arikayce for a long time. I am grateful that the side effects are not horrid with the exception of a 1-900-CALL -ME voice which was only temporary. It is time consuming so one has to commit to it as equipment has to be sterilized after each use. It takes around 45 minutes. I think it is an effective drug if used with the Big 3 and airway clearance. @irene5
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2 Reactions@lweirdo1 I pay nothing as they have a program to help those of us who can’t manage that price. I am rich in children - not money. Call the Arikayce people and they will direct you as to how to apply. My husband and I are retired educators with just our pensions so there is no way I would have been able to take Arikayce without that help. Your doctor could probably direct you to that help as well. I have learned there is help out there for medication payment and not just for Arikayce. There are specialty pharmacies that can help with other meds as well. @irene5
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1 ReactionThanks - yes they did help me with a plan. Now I hope this will help me - my last shot at getting better!
Oh, please.
What is your handheld nebulizer? I've been trying to find a portable nebulizer and a portable, quiet oxygen machine .
My nebulizer is the Phillips Innospire Go. It is on backorder everywhere right now.
Maybe others can tell you what they use.
Sue
You can order the Innospire Go directly from Phillips, of course out of stock there also. Here is their website where you can add your email and they will let you know as soon as it is back in stock. https://www.healthstore.philips.com/innospire-go-portable-mesh-nebulizer.html Bill
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1 ReactionSue @sueinmn I just ordered and received a Philips Innospire Go from Direct Home Medical. https://www.directhomemedical.com/innospire-go-portable-mesh-nebulizer-philips.html They require a prescription from your Dr. but they will contact the office to get it for you. It was easy to order. Price has gone up a bit but that's probably because of the demand. It is my favorite. Bill
I just spoke with a Philips rep and he told me that they are no longer manufacturing the Innospire Go. He couldn't tell me the reason, but he assured me it wasn't because it wasn't popular. He gets about a dozen calls a week inquiring about it. The decision to discontinue it was made at the end of December. So, any other suggestions?
I have been waiting for these to be restocked too. What are other good options? I’m going on my first trip in nearly 5 years and I’d hoped to get the InnoSpire Go but I’ll need to find another good portable nebulizer before I go.
Thanks,