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Cryptogenic Organizing Pneumonia (COP): Any success in treating?

Lung Health | Last Active: May 15 12:48am | Replies (19)
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@larryma

I was recently diagnosed with COP by my (non-Mayo) pulmonologist in AZ.. I spent 34 days in an AZ hospital in 2022. Eventually had a lung biopsy at Mayo in Rochester in Oct 2022, but no diagnosis was made at that time. Was being prepared for a lung transplant with a Fundoplication surgery to prevent GERD, which was a suspected cause. I’ve been on prednisone for over 2 years. Currently on 20 mg of prednisone daily, but inflation is still an issue, along with coughing and phlegm production. I am also taking 1000 mg of mycophenolate twice daily. Although I have improved by, and I am thankful, my life has been significantly impacted. I am still require supplemental Oxygen. I am working to get back to Mayo for their confirmation of the Diagnosis.

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Replies to "I was recently diagnosed with COP by my (non-Mayo) pulmonologist in AZ.. I spent 34 days..."
SusanEllen66 | @SusanEllen66 | May 15 12:48am

@larryma oh, I’m so sorry.
Over the last few years I have been on and off prednisone. That stuff tears up the stomach and causes terrible GERD. As soon as I started taking high doses of prednisone they immediately put me on Pantoprazole for my stomach. It helped for a while.
Even after stopping the prednisone , I still take the Pantoprazole because I have GERD. Last year I started coughing terribly like never before. It was especially bad when I would lie down. I was coughing copious amounts of thick stringy mucus.
I went to my ENT who said the cough is a result of the GERD! I thought he was crazy…he told me to drink Mylanta liquid right before going to bed. It helps. I do it every night and hardly cough at all now.

I hope you are able to get some relief. I’m also in Arizona. 🌵

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