1. < MAC & Bronchiectasis

ARINA-1 Clinical Trial with nebulized solution-NO ANTIBIOTICS

Posted by becleartoday @becleartoday, Aug 17, 2023

GOOD NEWS!!!

We have been asking for bronchiectasis treatments that are not antibiotics, and we have been heard!

Dr. Charles Daley is a well-respected expert from National Jewish Health in Denver. He was a keynote speaker at the World Bronchiectasis Conference and gave the closing remarks.

Dr. Daley is also the principal investigator of a study evaluating ARINA-1, a nebulized solution manufactured by Renovion that has been shown to prevent mucus from clogging our airways. Clogged airways cause inflammation and infection, a cycle we try to break with daily airway clearance and, often, antibiotics.

ARINA-1 is a sterile formulation that is manufactured under strict guidelines. The solution includes glutathione, ascorbic acid, and a buffer to modify the pH.

The trial will measure ARINA-1’s impact on quality of life, mucus viscosity, and inflammation.

Researchers are looking for 25 more participants for the 28-day study. Participants need to be diagnosed with non-CF bronchiectasis and have mucus. In addition to National Jewish in Denver, trial sites are located in Baltimore; Philadelphia; Seattle; Birmingham, AL; New Orleans; Tyler, TX; Winston-Salem, NC; Portland, OR; and Charleston, SC. If you live in or around one of these areas and are interested in the trial, let me know.

Click on the following link to clinicaltrials.gov for more information on the ARINA-1 trial.

https://tinyurl.com/tsh6fjnr

I am working with Renovion and researchers to share this opportunity, and I can help answer basic questions regarding:

-Participating doctors
-Laboratory studies of ARINA-1
-How nebulizing this solution differs from nebulizing glutathione alone or orally administered NAC
-The importance of the combination of glutathione and ascorbic acid

If you have other questions about the trial, the drug or how to enroll, let me know and I can help you get an answer from the Chief Scientific Officer at Renovion who is a great resource.

Most importantly, discuss this trial with your doctor.

Dr. Daley implored us to get involved in bronchiectasis and NTM research. Let’s show him and the researchers working on our behalf that we are willing to participate whenever possible.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

irenea8 | @irenea8 | Aug 19, 2023
In reply to @sueinmn "That is why I take mine every day, all the time. I started Mucinex first due..." + (show)
@sueinmn

That is why I take mine every day, all the time. I started Mucinex first due to persistent ear and sinus infections - who knew it would also be a help with my bronchiectasis years later?

And I started the NAC to help with the mucus, and it has helped with my asthma management & persistent over-reactive inflammatory system. I think it may also be a piece in the puzzle that is helping get my chronic pain under control. Whatever...it helps, has no known bad side effects, and I can afford it, so it is in my meds every day.

I have come to realize that many of the things I do for one problem end up helping others as well. I think that is why health care is such a puzzle, especially as we get older and acquire more and more ailments, diseases, complaints or whatever you want to call them!
Sue

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If I take mucinex daily (for example) some other co morbidities will be thrown off. It is hard to know what to do! Today taking it really helped the mucus to come up more thoroughly but I got a nose bleed! I get that more after taking certain remedies which thin the blood. Also Mucinex might throw off my intestines the next day. It is a real juggling act when you have other health issues that are upset by the things which help the lungs. So I try to take things as often as I can get by with and to rotate remedies. I think I may try NAC again but last use gave me insomnia and it also thins the blood. It is great that both those things help you with no side effects! I wonder why some people are so reactive to things (such as myself) while others are not. One of those mysteries.

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becleartoday | @becleartoday | Aug 20, 2023
In reply to @irenea8 "yes thanks. I think the glutathione bicarbonate from Thera naturals is safe (sure hope so) but..." + (show)
@irenea8

yes thanks. I think the glutathione bicarbonate from Thera naturals is safe (sure hope so) but the addition of the Ascorbic acid does sound important. I wonder if you mix it with Saline (Arina-1)? Or if you do it in addition to saline. I would not want to do without hypertonic saline. If my Dr responds to my message today I will let him know they do not need new test sites. Any new promise for pseudomonas I would love to hear about.

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There is hypertonic saline in the solution. I just hope people don’t try to whip up an ARINA-1 DIY batch at home!

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1 reply
irenea8 | @irenea8 | Aug 20, 2023
In reply to @becleartoday "There is hypertonic saline in the solution. I just hope people don’t try to whip up..." + (show)
@becleartoday

There is hypertonic saline in the solution. I just hope people don’t try to whip up an ARINA-1 DIY batch at home!

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i sure would not!

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1 reply
becleartoday | @becleartoday | Aug 20, 2023
In reply to @irenea8 "i sure would not!" + (show)
@irenea8

i sure would not!

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I’m sure you wouldn’t. But it could be an enticing thought to some people who are just looking for relief.

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susanp64 | @susanp64 | Aug 20, 2023
In reply to @sueinmn "That is why I take mine every day, all the time. I started Mucinex first due..." + (show)
@sueinmn

That is why I take mine every day, all the time. I started Mucinex first due to persistent ear and sinus infections - who knew it would also be a help with my bronchiectasis years later?

And I started the NAC to help with the mucus, and it has helped with my asthma management & persistent over-reactive inflammatory system. I think it may also be a piece in the puzzle that is helping get my chronic pain under control. Whatever...it helps, has no known bad side effects, and I can afford it, so it is in my meds every day.

I have come to realize that many of the things I do for one problem end up helping others as well. I think that is why health care is such a puzzle, especially as we get older and acquire more and more ailments, diseases, complaints or whatever you want to call them!
Sue

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Hi Sue! How much NAC do you take daily? I’ve been considering starting on it. I’ve cleared it with my PCP, but she didn’t have dosing recommendations. My grocery store has it in 600mg capsules.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 20, 2023
In reply to @susanp64 "Hi Sue! How much NAC do you take daily? I’ve been considering starting on it. I’ve..." + (show)
@susanp64

Hi Sue! How much NAC do you take daily? I’ve been considering starting on it. I’ve cleared it with my PCP, but she didn’t have dosing recommendations. My grocery store has it in 600mg capsules.

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I use NAC 600mg twice a day. Since it is a supplement sold for many other purposes, and many of the "mainstream" companies don't offer it, I carefully look for the USP or NSF seal on the bottle to make sure it is made in a good facility that opens itself and products to inspection and testing.
Sue

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1 reply
scoop | @scoop | Aug 20, 2023
In reply to @sueinmn "I don't think they get into the system that fast - I believe that taken daily..." + (show)
@sueinmn

I don't think they get into the system that fast - I believe that taken daily over time they have a lasting impact on the mucus. For example, if I stop Mucinex, I don't notice the thickening mucus for a day or two. With NAC, I ran out last winter, and noticed a difference after 4 days.
Sue

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That seems logical, according to drugs.com, some effects of guaifenesin should be noticed within 30 minutes of taking it orally; however, up to two days of regular dosing may be needed before the full effects are seen. Presuming same for NAC.

https://www.drugs.com/tips/guaifenesin-patient-tips

Thanks so much @sueinmn for the tip to take NAC/mucinex together as it has helped me clear and seems to keep me clearer than only using NAC.

REPLY
Arlo | @equanimous | Aug 20, 2023
In reply to @sueinmn "I use NAC 600mg twice a day. Since it is a supplement sold for many other..." + (show)
@sueinmn

I use NAC 600mg twice a day. Since it is a supplement sold for many other purposes, and many of the "mainstream" companies don't offer it, I carefully look for the USP or NSF seal on the bottle to make sure it is made in a good facility that opens itself and products to inspection and testing.
Sue

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Hi Sue, I have searched for NAC with USP or NSF seal and have had no luck. Can you say where you get yours?

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 20, 2023
In reply to @equanimous "Hi Sue, I have searched for NAC with USP or NSF seal and have had no..." + (show)
@equanimous

Hi Sue, I have searched for NAC with USP or NSF seal and have had no luck. Can you say where you get yours?

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I misspoke - due to issues regarding NAC supplements with the FDA, these are not certified in the US.
I have settled on the Pure Encapsulations Brand, which is GMP-certified in Canada (the equivalent of our USP) and manufactured in the US. I was using Jarrow before, a manufacturer I trust, but it is not so readily available now.
Sorry for the confusion.
Sue

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Arlo | @equanimous | Aug 20, 2023

Thanks, Sue. Reviews are incredible. I just ordered it. 🙂

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