Has anyone taken Rofumilast for Bronchiectasis?

Posted by kc88 @kc88, Dec 9, 2023

Does anyone have experience taking roflumilast for an extended period of time?
My wife has just started it

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@irenea8

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.

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It seems to be okay and of some help thus far. I started nebulizing 1 ampule every morning in October it only takes 5-8 mins. At first it seemed to work really well, but as the days and weeks have gone by, its effectiveness seems to have decreased some but not totally. I still do it faithfully though. My a.m regimen is Albuterol, then Pulmozyme followed by 7% saline. It all take about 45 mins. In evening I just nebulize the albuterol followed by 7% saline.

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@sueinmn

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

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@ sueinmn I find the combination of NAC and long acting mucinex to be effective, more effective than NAC alone.

I would be curious to read about concerns about NAC stimulating abnormal cell growth. @minute22 would it be possible to post a link?

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@scoop

@ sueinmn I find the combination of NAC and long acting mucinex to be effective, more effective than NAC alone.

I would be curious to read about concerns about NAC stimulating abnormal cell growth. @minute22 would it be possible to post a link?

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Here’s one article about it. I asked my pulmonologist about this connection and he wasn’t aware but also it’s not something that he recommends. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9563555/#:~:text=Due%20to%20its%20antioxidant%20mechanism,of%20heme%20oxygenase%20%5B88%5D.

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Update, my wife discontinued it due to bad migraines as a side effect

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@scoop

@ sueinmn I find the combination of NAC and long acting mucinex to be effective, more effective than NAC alone.

I would be curious to read about concerns about NAC stimulating abnormal cell growth. @minute22 would it be possible to post a link?

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I also use the combination, and have for several years. The NAC has helpful to prevent my overactive response to all inflammatory agents.

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@sueinmn

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

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I take NAC 600 mg twice a day on the recommendation of my pulmonologist.
Anna

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@minute22

Here’s one article about it. I asked my pulmonologist about this connection and he wasn’t aware but also it’s not something that he recommends. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9563555/#:~:text=Due%20to%20its%20antioxidant%20mechanism,of%20heme%20oxygenase%20%5B88%5D.

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Thanks @minute22 for posting. Quite a challenging read! I can’t tell but it seems this is cancer research. Is this the way you interpreted it? Nonetheless, I will ask my immunologist about NAC and its safety my next visit.

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I have been prescribed Roflumilast but haven’t started it. I also wonder if anyone else has taken it and how it affected them?

Has your wife had good luck with it? I have severe anxiety and after reading the possible side effects I’ve been reluctant to begin. I’d appreciate knowing how your wife is doing with it.

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@uma1

I have been prescribed Roflumilast but haven’t started it. I also wonder if anyone else has taken it and how it affected them?

Has your wife had good luck with it? I have severe anxiety and after reading the possible side effects I’ve been reluctant to begin. I’d appreciate knowing how your wife is doing with it.

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I’m sorry, I just read that your wife discontinued Roflumilast.

Has anyone else taken it?

I’m also curious about NAC. My doctor never mentioned it. I do have Melanoma and don’t want to try it if there’s a cancer cell growth associated with it. My doctor doesn’t know anything about it. I did purchase some after seeing several of you are taking it. Thoughts on both?

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