Has anyone taken Rofumilast for Bronchiectasis?

@kc88 Welcome to Mayo Connect - we are a community of patients and cargivers who support one another and share our experiences.
I am guessing from your title and question that your wife has Bronchiectasis, is this a new diagnosis for her?
Is she receiving any other treatment for it?
Also, Rofumilast id usually used in severe COPD, does your wife also have it or another lung condition?
Sue

Sue,
Thanks for reaching out. It is a new diagnosis after two years of progressive coughing. The pulmonologist initially called it chronic bronchitis but we are waiting for follow up consultation after first run of tests at Mayo.
Dr. is our of country until January but started her on Roflumilast based on what CTs showed. He also prescribed 600 mg N-Acetyl Cysteine to thin mucus

That is is great that you are on track to figure this out. There are so many causes for coughs, and lung disorders are frequently overlapping. Mayo is a great place to be when dealing with complelung conditions. I am happy to hear the doc has recommended NAC for thinning mucus. The evidence that is helps is mounting. It has helped me for over 2 years-I am suffering my first exacerbation of 2023. I think I jinxed myself by mentioning a few weeks ago how well I am doing.
Does the doc have her doing any airway clearance?
Sue

No, since he is out of the Country we have had no follow up to the tests at Mayo on November 28th.
We are hoping to connect with a local primary care doctor to help us navigate symptom management.

What do you do to manage symptoms successfully

Sue, I am intrigued about your comment that NAC-600 has helped you thin the mucus. I have been diagnosed with NSIP with fibrosis & Bronchiectasis. I currently do the usual airway clearance with albuterol, Pulmozyme, followed by7% saline. Twice a day. I also do mucinex 600 in morning. I’ve asked both of my Pulmonologists if okay to try NAC-600, and they said yes. What changes did you notice in your mucus and how long after you started taking it did you notice the difference. I’m also gonna get the opinion from my Pharmacist because I’m on so many other medications. Thank you for you input, and have a great holiday.

Is the Pulmozyme very effective for you? My Pulmo wanted me to try it but then I heard it was not a good idea for Non Cystic Fibrosis Bronchiectasis patients.

Are you taking the NAC 600 mg once or twice daily?

I take it twice a day. How about others?
Sue

I was taking it twice a day but then read some concerns about stimulating abnormal cell growth in some studies but I think that was in people that had cancer, it made me nervous so I asked my pulmonologist and his response was that it wasn’t part of their treatment protocol. So my totally unscientific response was to cut my dose in half. I’m kind of in limbo on it which is why my question to you and curious of others responses.