MAC with sinus issues

Not diagnosed with MAC but I have CRS (chronic sinusitis w/o polyps). If I have a sinus infection it usually starts with some trigger, which leads to sneezing and some crusting at my nose. If left untreated by my home program it usually ends up in my lungs and they get gunkier even though my sputum sample does not grow anything. The respiratory culture usually show lots of neutrophils, however, indicating inflammation and possible infection (probably colonization in my case). I do not necessarily cough more during a sinus infection unless it has gone to my lungs. Even without infection my "cough times" happen several times a day anyway (at night, eating, talking a lot, laughing etc).

ENT told me recently that for sinus infection to clear it needs 14 days of antibiotics. Sometimes more if it's recalcitrant. It's difficult to get a nasal culture unless the infection is very active. My home program includes rinsing with saline and budesonide, steaming (when there's pressure/stuffiness), Sudafed, Tylenol. For the crusting I use Ayr and sometimes muprirocin sparingly. All this on top of airway clearance 2x day! Hope you feel better!

I’ve had sinus issues since shortly after being diagnosed with Mac over 6 years ago. It strangely started with my ears being plugged while flying. I’ve also had fluid in my ears and post nasal drip since then, although that has improved to the point that I no longer use nasal sprays unless I get a sinus infection. I’ve found that the best thing for me is to faithfully take Mucinex twice a day, which I take for my lungs but it seems to keep my sinuses from getting clogged up with thick secretions. I’ve never had a nasal culture analyzed.

I’ve seen a couple of specialists about my sinuses and they’ve recommended treating symptoms, which I have been doing. For me, I always know I’m getting sick (eg an exacerbation) if my sinuses worsen and so I get that treated with antibiotics before it moves into my lungs. It feels like we all have to figure out a treatment plan for managing symptoms. I’ve found that this forum has been really helpful in get information on what works for other people.

I've had significant sinus issues and had intermittent horrid coughing episodes from all the drainage before my CT that looked like MAC (cultures negative). Docs then started being aggressive in trying to get drainage under control. The bad coughing episode improved with nasal sprays-Astepro and steroid initially and later added Ipratropium. I also do sinus rinses with mometazone using Neilmed's Squeezie. I do them 1-2x/ day depending on on season and intermittently I try just saline without the steroid. Rare coughing episodes now.

Btw, first pulmonologist thought bad CT could be due to sinuses, but Ent was skeptical. I did review and Japanese thought it related, "sinobronchial syndrome," as I recall, and had several studies. (Haven't looked lately.)
Good luck. The coughing can be exhausting.

What time of day do you take Astepro? My kids have had such success with it I thought I'd give it a try. Daytime dose seemed to work great but the p.m. dose (bedtime) seemed to irritate my throat and kept me from sleeping.

I use mine when I get up and at bedtime. I have dry mouth syndrome, and use Biotene mouthwash at bedtime. It prevents thr guy throat you are describing too.
My daughter does her second dose at suppertime.²

All of these comments are very helpful. I am going to stay on the Doxy for 14 days, not 10, get the Astepro and use Biotene. Many thanks for sharing your experiences. I will let you know how I feel in another week! Best to all, Pamela

I used to wake up in the middle of the night with a really dry mouth every once in a while. I got Biotene spray and it worked well with just a small spray on my tongue. It was also nice to keep it by the bed so I didn’t have to get up!

I take it in morning and bedtime (or hour or two before). I've only been on it again about a week since I finished the very last drops of Triple Spray. I've always hated Astepro's taste and have been trying leaning forward with head bent and hands on knees to get it to sinuses and avoid back of mouth taste. That seems to help.

I had a bronchoscopy on June 2nd and my Acid Fast Culture resulted value was Mycobacterium abscessus group Abnormal, Fluorochrome Stain Value - no acid fast bacillus seen. My first ID appt is this coming Monday.😳 I also have had 2 sinus surgeries in the last 5 years with polyps and full of debris in all sinuses. I started Dupixent in May and no polyps at my Rhinologist appt yesterday. But my Rhinologist shared with me yesterday that my nasal lining isn’t functional, no way to fix it, and no option of sinus lining transplant. Now I feel more challenged because my sinuses and lungs aren’t protected by my sinus lining. Feeling very discouraged, and after reading about ID treatment I am very anxious for my appt. Has anyone else had this sinus experience? Thank you.

Welcome to connect. I'm sorry you need to be here, but think you'll find it a helpful group.
I'be had significant sinus issues intermittently over the years, but don't have nasal polyps and haven't been told my lining is nonfunctional. I'm sorry you are dealing with that. I am responding in hope others see your post.

Like you, I just started Dupixent (different indication) with my loading dose 3 days ago. I am encouraged by some anecdotal stories and one published case report showing an improvement in bronchiectasis. Does your CT show bronchiectasis?

Are you being treated at a MAC/bronchiectasis center? A lot of us have found that quite helpful since Mac isn't a common disease.
Are you doing airway clearance yet?.