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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)
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@heathert

@anniepie No I diddnt get any shortness of breath or difficulty breathing on Arikayce, hopefully the ventolin is working well for you.
I do not boil my aerosol heads, instead I use a sterilizer so they are not too hot and not in the boiling water, I put them onto a paper towel after to dry. It is very difficult to keep them sterile I feel, my dr said if she put a plate down on a table,M AC would be on it in no time. Maby put them in a open snaplock bag to dry, still not fullproof but ok.

Annie I have a question for you, did you get your Arikayce in Australia and was it subsidized by the govt, or did you get it from overseas, I need some as the big 3 is not working and last time when I was on the trial Arikayce worked for me, I did not want to go off it.
Take care Heather

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Replies to "@anniepie No I diddnt get any shortness of breath or difficulty breathing on Arikayce, hopefully the..."
Tina Sims | @tinaesims | Apr 22, 2021

I had not thought of a sterilizer. Do you use just a baby bottle sterilizer?

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anniepie | @anniepie | Apr 23, 2021

Thanks Heather @heathert.
No I am part of the USA trial and have to order it from the USA each month. This is the first time for me -- and probably the only time I can get it. For me, this time it is subsidised as part of the trial. But after that it would probably be a huge cost for me to get it.
Arikayce isn't approved in Australia and it looks like it probably won't be approved in Australia in the future. They did an interim study in the USA, and the results showed that longer-term, it had more serious side effects than the existing big 3. So it's not likely to get approval in Australia in the future, And that's also why Arikayce isn't likely to get full approval in the USA either. (It only has "limited population" approval there).
I noticed in the study they only followed up on any relapses for 3 months after all meds were stopped. So it seems to work better for a while, but that may not last for many people. I really wish there were better drugs for us Heather.
Hoping and praying for it.
Annie

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