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

Hi cmi,
We have been studying bacteriophages as a potentially valuable therapeutic agent. Bacteriophages or phages - as they are commonly known - are not new. You can read about their history and current research in the attached papers.
The University of California San Diego's School of Medicine has a Center for Innovative Phage Applications and Therapeutics (https://medschool.ucsd.edu/som/medicine/divisions/idgph/research/center-innovative-phage-applications-and-therapeutics/Pages/default.aspx).
It is worth noting also that there is at least a pharmaceutical corporation (https://www.armatapharma.com/) actively developing products in this field. (I disclose that I don't have any connection with such company).
Regards,
Armando

I just had my first appt at Mayo clinic in Jacksonville, FL with Dr Margaret Johnson this week. It went very well, and I was impressed with the entire visit. I questioned her on any new treatments on the horizon. She did not think inhaled Nitric Oxide would be an option but did go on to say Phage therapy was promising, and also mentioned Dipeptidyl Peptidase-4 inhibitors (DPPI) as a new treatment possibility for NTM infections and said there were some Phase 3 clinical studies that showed it to be a good possibility as a treatment. A google search could not find any info on DPPI use for NTM or MAC but did have strong possibilities for corona viruses. Hopefully this new info will become available soon.

@poodledoc This article might be of interest: "The emerging role of DPP-4 as a therapeutic target in lung disease": https://www.tandfonline.com/doi/full/10.1080/14728222.2020.1721468

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

@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.

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