Alternative treatments

Funny you should ask Ling. I have been looking into Phages lately. I know about the Phage study for Pseudo. A friend of mine is going to participate in one of the study locations. There is a location about 4 hours from me but I do not qualify with their criteria. My BMI is too low. Also it would be very hard on me to make the repeated trips. The Phages do not necessarily get rid of Pseudo in all cases. Or you might have to repeat treatment for some period of time to clear it. But it is very hopeful. They are studying the use of Phages alone and in conjunction with inhaled antibiotics. I wish we had access to them NOW! These things take so long to get approved.

Sorry to hear that you are not able to participate. Hope the study result will be possitive and hope the Phages gets approved sooner.

Ling

thanks for the info

Hello , you can have a lot of information on a facebook group name Lung Matters.

Hi everyone! Im newbie here… looking for someone who could share insights on their bronchiectasis journey.. which meds are you into. Tnx 🙏

@jmrpretz, as a long-time Bronchiectasis patient. The most important thing is to find a pulmonologist who has a lot of clinical experience with it. I was fortunate to have found one here in Atlanta.

@jmrpretz Welcome to this helpful group. Tell us a bit more about the severity of your bronchiectasis, if you have infections and your treatment. Are you treated at one of Centers of Excellence? We’ll be able to share more helpful info.

My journey-I’ve been diagnosed 3 years. I was thought to have MAC for several months, but ended up going to Mayo to get a diagnosis and plan. They did a bronchoscopy for a culture and much to their surprise, it was negative for MAC. Therefore, I haven’t been on big 3. I do airway clearance daily using Albuterol (mild asthma) then 7% saline. I’ve been on the later for a year and it was started because I’d caught everything the winter before. I also have allergies and post nasal drip/sinusitis was a big issue for me and possibly the cause of the bronchiectasis. I’m on pretty aggressive meds to control that.

It has been a year since I’ve had a sinus/ear infection or bronchitis. That’s the first year in at least 20 (as I knock on wood : ) that I haven’t been sick. I even did a slow half marathon about 3 weeks ago-first time in 8-9 years I’d been able to complete a training plan despite several attempts. I’m giving the 7%saline credit because it was the new thing, but it’s likely a combination of all.

May I ask what meds you’re in for post nasal drip/sinusitis? I use Guafenisin (Mucinex) constantly. But other meds I used in the past are not recommended for BE

@pacathy thank u dear. Ive been diagnosed since the last 3 years, currently im into inhaled colistine, 7% saline now doing it for almost 5 months.

@galing As I said, my treatment is fairly aggressive because some think it caused the CT changes and bronchiectasis. The other theory is that I had MAC and cleared it without meds.
I’m currently on Mometazone sinus rinses 1-2x/day. Trying to cut that back.
I’m restarting Mayo’s (mixed there) triple spray with Mometasone, Ipratropium, and diphenhydramine. If you can’t get this, mometasone is a steroid nasal spray and is OTC. Ipratropium is prescription and is the most helpful in drying me up. Astepro is similar to diphenhydramine, but tastes worse. I used these 3 while trying to get local docs to order from MAYO. The 2 sprays seem to work much better than individual 6. I was on Astepro before I went to Mayo and it helped, but was not good control.

I also took 1 antihistamine-Allegra or Zyrtec until I had a recurrence of autoimmune skin disorder and am on higher doses.
The steroids and Ipratropium are controversial in bronchiectasis. Mometasone has less systemic effect than others. I asked my pulmonologist if it was Ok to take higher dose steroids when I get the bronchitis/sinus/ear infections and he said short term high dose would help decrease the inflammatory response.
It seems some pulmonologists don’t like Ipratropium because of drying effect esp as a nebulized med. My Mayo doc said “pulmonologists always worry about excess secretions.” I have clearly been better with fewer infections when my secretions are better controlled, though I do keep trying to decrease the mometasone.

Good luck!