ARINA-1 Clinical Trial UPDATE- (not an antibiotic)

I’m interested. Is there a site near Knoxville TN?

Unfortunately, there isn’t a test site near Knoxville.

I was all set to begin this trial on Monday, September 18. I had researched it and was very excited to be a part of it. UT Tyler had my info and all was good until I kept my completely symptom free 2 1/2 year old grandson the day before he developed symptoms and tested positive for COVID on September 14. After 3 1/2 years of not getting COVID I woke up with the symptoms the day we were to travel to Tyler. I started packing and tried to ignore my symptoms away. That didn’t work so I took a test and was positive. That knocked me out of the trial!

I’m happy to say that my case was light and extra airway clearance kept it out of my chest. This variant seems to be mostly head congestion.

The timing of this was frustrating and confounding to me! To say I was disappointed is a huge understatement. I hope to have another opportunity to be involved in a trial in the future.

I have a new patient appointment with Dr. Pamela McShane at UT Tyler in December. I know she is part of overseeing this trial and knows much of the latest treatments for bronchiectasis and the infections that accompany it. I feel very blessed to have finally gotten in with her. I doubt I will get near my grandkids the week before that appointment!

Thank you Linda for being such a great source of information and encouragement!

Oh my! I bet you are so disappointed. Yes, as a grandmother I can say as much as we love them, our grandchildren are germ factories:) I deliberately have stayed away from mine the last couple weeks because I’m going to be traveling for a month. It’s so hard to do, but with Covid on the rise and I just couldn’t risk it. The good news is you’ll see Dr. McShane in December. All the best to you and thank you for being willing to participate in research💕. Linda

Thank you for your post, Linda. You are such a wonderful support system! I am waiting to hear back from the team at Nat'l Jewish Health to see if I will be accepted into the Arina-1 study. Fingers crossed.

Exciting!

But there is one in Birmingham Alabama!
Contact: Heather Hathorne PhD, RRT
hyhathorne@uabmc.edu

I believe there is also travel reimbursement

At age 68 I was Dx’d with mild bronchiectasis and Mac in mid-2022 after post-covid pneumonia. I discovered this site shortly after and scheduled a visit with Dr. Daley at NJH for complete work-up then advised to start nebulizing hypertonic saline with aerobika. No antibiotics at this time as cultures have been 2-8 cfu/ml which is considered minimal. Now scheduled to begin the Arinia 1 trial at LCMC which is LSU medical in New Orleans (they collaborate with NJH) on October 11th. Hoping I am assigned the actual medication, fingers crossed! Best to everyone, Judy

Fingers-crossed, Judy! But in either case, thank you!

Just completed participation in Arina-1 study in New Orleans at LSU Medical
On the first 3 hour visit with Nurse Practioner blood was drawn, nebulized with 3% saline to collect specimen, pulmonary function with spirometer, NP listened to chest and check for swelling around ankles & vital signs taken, I received 3 weeks of individual ampules of frozen med in a little cooler, 2 weeks later I received another 2 weeks supply (the extra 1 week supply was returned at 2nd in person visit), a special pari mesh nebulizer, pulse oximeter and spirometer (last 2 items are mine to keep) participants are paid a total of $240 for participating given when each stage is completed during the study.
- nebulized daily x2 with Arina-1 for 28 days, kept daily journal documenting O2 sat and answered questions relating to lifestyle & any possible side effects
- once a week I reported any Yes answers on the daily journal and O2/spirometry results
- I’m 99% sure I received the medication as I noticed a slight sting immediately when nebulizing, my teeth whitened and sometimes the nebulizer would have a residual orangish oil around the cup.
- had a tiny bit of hemoptysis twice in the beginning but mostly my sputum was clear
- after 4 weeks I had another in-person visit where everything done by NP on first visit was repeated.
- then for the next 4 weeks I was told not to nebulize and kept a once a week journal reporting O2 and spirometry results plus answering only few questions.
- my last in person visit was yesterday and same NP exam and test as first visit were completed.
- I will now be back to nebulizing 1-2 xs per day with 7% and glutathione 2-3 xs per week.
I am sure I have left out some details but overall I believe the treatment was effective, I’m experiencing less SOB and seem to have more energy.
BTW during the treatment period we had a massive swamp fire that decreased our air quality to the point where we were advised to wear masks, I could smell it in my house for weeks but during this time I did not have much in the way of symptoms although I used albuterol daily which more than usual.
Here’s an informational link to the trial https://trialbulletin.com/lib/entry/ct-05495243
Happy Holidays!
Judy