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

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

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

Hi Heather @heathert thaks so much -- I do have some other Arikayce questions.

No I'm not able to get Aricayce in Australia -- it hasn't been approved here yet or in many other places either yet. But I've recently been approved to be part of the international Arikayce trial, which is continuing over a longer period of time.

(My lung specialist is a co-author on this international trial's published articles -- Prof Rachel Thomson. They've already published the main efficacy results I think. It seems that this current part of the trial is the broader NTM patient testing phase).

I have to wait for the drug and the inhaler system to arrive here from the USA -- I think it has to be a PARI system

I think you were part of an earlier phase of the trial -- possible the main efficacy testing part.

Question: Did the Arikayce trial people supply you with your PARI e-flow rapid inhaler machine, or did you buy it yourself ? (I'm wondering if the trial people use a slower PARI system than the e-flow rapid). Your rapid system sounds much better to use.

Thanks very much for all your help
Annie x

Hi Heather @heathert thaks so much -- I do have some other Arikayce questions.

No I'm not able to get Aricayce in Australia -- it hasn't been approved here yet or in many other places either yet. But I've recently been approved to be part of the international Arikayce trial, which is continuing over a longer period of time.

(My lung specialist is a co-author on this international trial's published articles -- Prof Rachel Thomson. They've already published the main efficacy results I think. It seems that this current part of the trial is the broader NTM patient testing phase).

I have to wait for the drug and the inhaler system to arrive here from the USA -- I think it has to be a PARI system

I think you were part of an earlier phase of the trial -- possible the main efficacy testing part.

Question: Did the Arikayce trial people supply you with your PARI e-flow rapid inhaler machine, or did you buy it yourself ? (I'm wondering if the trial people use a slower PARI system than the e-flow rapid). Your rapid system sounds much better to use.

Thanks very much for all your help
Annie x

@anniepie This is Irene. I am part of the Arikayce clinical trial in the US . I started on June 8, 2020. The Panther Pharmaceutical Company supplies everything. Yes, it is a Pari e flow. You are also provided with a virtual nurse for an intensive lesson/training. There is no cost to you except for buying distilled water for sterilization. The Arikayce support is genuine and will answer any and all questions that may arise. Every month when my Medicare print out arrives, and I see almost $11,000, I am grateful to be in this trial. Good luck to you. @irene5

How do you the difference between your MAC acting up or a COPD exacerbation? Please help!!

@anniepie This is Irene. I am part of the Arikayce clinical trial in the US . I started on June 8, 2020. The Panther Pharmaceutical Company supplies everything. Yes, it is a Pari e flow. You are also provided with a virtual nurse for an intensive lesson/training. There is no cost to you except for buying distilled water for sterilization. The Arikayce support is genuine and will answer any and all questions that may arise. Every month when my Medicare print out arrives, and I see almost $11,000, I am grateful to be in this trial. Good luck to you. @irene5

Hi @anniepie Yes the trail included a pari E flow, a fantistic machine which delivers the med quicker, but I had to give it back at the end and buy my own, for my saline use. I may have to use Arikace again if my drugs do not work this time, wonder if I can be in the trial a second time as New Zealand has not approved it yet also , and it is not cheap! All the best Heather

Oh wow! Irene @irene5 that is a huge cost each month.

In March I will ask my lung doctor (who is a co-author on this trial) if she knows what the timeline is likely to be for FDA approval. (And for the TGA in Australia). Drugs usually go down in price after approval and eligibility improves.

Oh I wish they would hurry up and support Aricayce better soon for when you need the drug again in future!

Heather @heathert can I ask if you know what the cost would be in New Zealand ?

Hugs to you both
Annie