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

This was a wealth of information...looking forward to you sharing this year’s conference. Mega thanks for putting it out there for those of us who haven’t been on this Mayo forum long.

Thank you for this site. So informative. Im in Hawaii and giving some serious considerations to going to the National Jewish Health in Denver when the weather warms up. Im trying to gather as much information about Bronchiectasis and MAC. Thank you Sue

@karensarasota,
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Hi Kathy @kathyhg, I was wondering about the SPERO trial too. Here's a link to where they're at (as of 21 Feb 2021): https://www.centerwatch.com/clinical-trials/listings/255544/phase-2a-safety-tolerability-pharmacokinetics-and-efficacy-of-spr720-for-the-treatment-of-patients-with-mycobacterium-avium-complex-mac-pulmonary-disease/ ,

Clinical trials like this seem to take a very long time, compared to all the money thrown at Covid vaccines. They are still recruiting for their Phase 2a trial for the new NTM drug -- currently called SPR720. This phase is expected to finish in 2022, but then after that there will need to be a Phase 3 trial with a larger number of NTM patients. Just recruiting the number of NTM patients needed for trial phases seems to take a long time with NTMs, so it looks like the new drug is a long way off yet.
All the best, Annie

Your comment "Clinical trials like this seem to take a very long time, compared to all the money thrown at Covid vaccines" is SO true of most medical research!

Remember, however, that what you see and hear on Connect is a very tiny group compared to the hundreds of millions of lives impacted by the pandemic.

Here is some food for thought -
1) NTM is not not well-known, not contagious, and usually not fatal, so there is little urgency. Who among us even heard of it before our own diagnosis?
2) Medical research is very expensive, so the research dollars go where there is the best opportunity for recovery via new therapies - ie conditions that affect millions, not thousands. Unlike the Covid-19 vaccine, most research projects are measured in years, if not decades. That is how long it takes to set up a study, recruit participants, try therapies, produce results, have them peer-reviewed and publish.
3) "The squeaky wheel..." Maybe we need to begin to squeak.

By way of example, before my niece was pulled from her project to do Covid research at the University of Minnesota, she was working on a study of early interventions for stroke that is a 10-year project - and MANY more people suffer strokes each year than have NTM.

Sue

@anniepie I have signed up, there was some odd answers to questions, maby they want Latino or Hispanic people, oh well hopefully they will keep in touch. Nice to know these trials are being done. Take care Heather

Hi Heather @heathert, I've finally received the Arikayce and Lamira inhaler system. They just told me to go and look at a video when I get home and gave me the internet address -- https://www.arikayce.com/taking-arikayce-video/ . Well I'm totally freaked out by this site. (I've already been on the Big 3 for two and a half years. That was quite stressful enough right at the beginning, thanks. But this is a whole new deal).
The problem is I am alone. I don't have a partner or family or anyone living with me if anything goes wrong. The things they headline you really need to have someone around for -- immediately. So i am stuck at the moment, and don't know what to do. I can't start using it yet! Can you help me? Can anyone help?

@anniepie Oh my goodness! You need a whole lot more than being told to watch a video. Call Panther pharmacy and see if they can send you an online nurse to walk you through it! If not I will send you my number privately and walk you through it myself. So sorry! I was a wreck even with the nurse. It took me two hours of an online tutorial with a nurse. She was sooo patient. @irene5

@anniepie, I never had problems with Arikayce and I am not on Lamira. Maby ask your specialist about it, to see if he thinks it is necessary to have someone around or maby you could have your first dose at your Dr s office and stay for a few hours, otherwise ask a friend to stay the night. It is great stuff and worth it. Let me know how you get on. All the best Heather

Thanks so much Irene @irene5. Yes I've really had the 'wobbles' about all of this. All the warnings on the website I was given and the video freaked me out about the 'common' side effects.
Just trying to deal with all of this MAC/MAI stuff alone can be really tough. (I really sympathise with anyone in this forum who has to deal with this alone and lives alone).
When I don't get adequate support from some medical specialists it all falls down -- that happens too much unfortunately. I wish I had the nursing help you mentioned in Australia where I am, but I don't,
I've now ordered a personal medical alarm etc -- because there is nobody around if I have any bad side effects with anything. I won't start the Arikayce until I've got that all in place.
Thanks so much for your kindness. Hugs from Annie x