MAC with sinus issues

Thank you for your response. Yes, I was diagnosed with Bronchiectasis(BE) in 2022 and CT scans regularly depending on the results.

My most recent pulmonologist prescribed the Dupixient to help prevent the regrowth of polyps. My Rhinologist had suggested it too. I really haven’t experienced any side effects, maybe a slight increase with my sense of smell. The injection is a little painful but over within seconds. That is encouraging if it can show improvement with BE.

I live in Ohio and was referred to my current pulmonologist with Ohio State University Wexner Medical Center this year. She is very experienced with BE and collaborates with their Infectious Disease group. After my bronchoscopy in June, my doctor ordered the vibrating vest and increased my nebulizer treatments to twice a day, same as vest. I’ve been trying to do airway clearance and my mucus seems to have increased after weeks of the vest. I do have difficulty bringing up mucus for a sputum sample. My pulmonologist has recommended postural drainage positions and I’m trying that too.

How long have you been dealing with MAC/BE? Thanks again for your thoughtful comments.

My first ID appointment is Monday, please share anything that you feel is important for me to discuss or ask about. I have my list started. Take care.

I'm glad you are tolerating the Dupixent.
It sounds like you've found providers you are comfortable with and that is important.
I've had bronchiectasis for 3 years. I was thought to have MAC based on CT's, but went to MAYO after a few months to get a diagnosis and plan and the bronchoscopy cultures were negative. Lucky! I'm was able to get into Penn and am followed there-lucky again.
Question-are you using hypertonic saline-3 or 7%? That can help with sputum production as can exercise.
I'm going to tag @colleenyoung. a moderator, who might know resources for your sinus issues.
I'm also going to tag @sueinmn, a mentor who might help with MAC questions. Sometimes we miss new questions on threads already started.
I'll also share this link on airway clearance by Pamela McShane, an expert in bronchiectasis and MAC.
https://m.youtube.com/watch?v=VEYK67nld_o
Good luck! Let us know how appt goes.

I hope you tolerate Dupixent too, and see some improvements.

Currently I am using 0.9% sodium chloride. My pulmonologist called me Friday, and she is open to trying the saline. I will ask the ID doctor tomorrow. Which do you prefer….3 or 7%, do you think it is helpful?

Thank you for the additional information and tagging other people on this group. I did watch the BE YouTube in July, helpful information.

I am a positive person but I have to admit that this MAC diagnosis is very challenging. It is definitely life changing for me. I am 67 years old, stay active, and have a busy social life. Will see how tomorrow goes.

Have a great day!

It will be interesting to hear what the ID doc would like you to do. It seems that many specialists are open to "watch and wait" - having you do airway clearance twice daily and monitoring via sputum culture and CT scans to see if the infection is decreasing, stable or increasing.

With you added issues with sinuses, the docs may want to be more aggressive in treating. Or if your CT scans show cavities or large nodules (both evidence of higher level of infection.)

As for the saline, if you have a confirmed infection, 7% may be more beneficial. NTM bacteria have a very hard time surviving/multiplying in the higher salinity. It can be hard to tolerate at first, so mixing .9% and 7% half and half can help you get accustomed.

@janetannfaust, you've received great advice from @pacathy @sueinmn and others to help you prepare for your appointment with the infectious diseases specialist this week.

If you scroll to the bottom of each of these links, you'll see a list of questions to ask your doctor and how to prepare for your appointment.
- Infectious diseases https://www.mayoclinic.org/diseases-conditions/infectious-diseases/diagnosis-treatment/drc-20351179
- Chronic sinusitis https://www.mayoclinic.org/diseases-conditions/chronic-sinusitis/diagnosis-treatment/drc-20351667

I'm sure you have most of the questions already noted, but just in case. 🙂

Thanks to everyone for the valuable information.

I don’t recall seeing CT scan comments about cavities, and I have had nodules come and go. My next CT scan is scheduled for Sept 27th.

I will share what the Dr says tomorrow.

I wanted to share information from my ID appointment today. Really liked the doctor.

My ID diagnoses are: Mycobacterium abscessus (M abscessus) infection, Non-tuberculous mycobacterial pneumonia, Archromobacter pneumonia, and Bronchiectasis with acute lower respiratory infection. One is fast growing and one is slow growing. He discussed 2 treatment options…..1. taking 3 oral antibiotics for 12 months or 2. Starting with IV therapy that would require me to be hospitalized to monitor bloodwork etc. He scheduled meetings for after my appt with people to discuss the approval process and availability of the needed oral antibiotics. He didn’t recommend the “wait & watch”, and I think that would make me worry most of the time with my diagnoses. I had some bloodwork done after my appt.

When I got home this afternoon, ID Dr called me and said a couple of the oral drugs will be a few weeks so we need to start with IV antibiotics in the hospital. I will be admitted this Wednesday starting with IV Amikacin & IV Imipenem, and oral Linezolid. When I am discharged, I will continue with IV drugs and 1 oral and a nurse will check on me weekly. He showed me the list of drugs to treat my infections and there aren’t many options.
Plan 1-2 months of this regimen and hopefully transition to: 1. Continue oral Linezolid, 2. Oral Clofazimine, and 3. Oral Omadacycline.

It is a lot of information to take in. Trying to stay positive.

Hope everyone has a good week!

Thank you for sharing the info from the appointment-it's helpful to know how docs are treating people.
I certainly hope the meds work and you tolerate them well. Please keep us posted.