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

MAC & Bronchiectasis | Last Active: Nov 21, 2024 | Replies (9354)
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@anniepie

Hi Heather @heathert. I really hope things are going okay for you and your family -- what a time we live in !

I've been approved to get the Arikayce and I'm now just waiting to get the meds and equipment from the USA. I've also ordered some Strepfen online (we don't have it in Australian pharmacies)

I have some Arikayce questions for you if that's okay: How often did you take a Strepfen lozenge -- was it every day? Several times a day? Mostly only for the first few weeks? Or all the time you were treated with Arikayce?

(Strepfen contains a relative of Ibuprofen -- unfortunately these drugs interact with my heart meds and can reduce the effect of one of the heart drugs I need, so I will have to try juggling the times I take it etc. What a bummer!)

Hugs, Annie

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Replies to "Hi Heather @heathert. I really hope things are going okay for you and your family --..."
heathert | @heathert | Jan 29, 2021

Hi anniepie, that is great that you have managed to get Arikayce into Australia, New Zealand does not have Arikayce since the trial and so it is not funded yet, Do you have to pay for it in Aussie. I would have to pay full price.

You only need 1 or even half a strepfen if you need it (husky voice or sore throat) mostly for the first few weeks and occasionally the first few months after the Arikayce nebulising. Also after nebulising rinse and gargle with water, that helps your throat also. I had Arikayce just before bed so I diddnt have to talk until the morning and strain my throat.

Sorry they interact with your other meds, I hope you can get it sorted out.

Any other Questions do not hesitate to ask.

Take care
Heather

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irene5 Irene Estes | @irene5 | Jan 29, 2021

@anniepie This is Irene - I do not use Strepfen only because I have been unable to get them. I use Riccola ( singing that now), and they have worked for my throat after Arikayce. Good luck to you.

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