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

MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)
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@anniepie

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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Replies to "Thanks Heather @heathert. No I am part of the USA trial and have to order it..."
heathert | @heathert | Apr 24, 2021

Thanks @anniepie , I did not realise that you were in the USA trial, that's great. When the big 3 do not work Arikayce does which is great. Do you remember what the Arikayce long term side effects were, maybe they should follow it up must longer
. I wish we had cures for this.
Take care Heather

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bnthorson | @bnthorson | Apr 24, 2021

I took amikaycin first, had bad side effects, then tried Arikayce. (The wait on Arikayce was due to financial) after paying 2500$ US, I took 4 doses and my throat started swelling. I was surprised no one followed up, even though I told the distributor, so there is probably no record of my side effects. To make it worse , I have 24 unused doses of a very expensive medication. I would love to give it away, if someone lives close enough we could drive, so far no luck.
Meanwhile I am now on the 3+Clofazimine. Side effects are very manageable.

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