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Chronic Eosinophilic Pneumonia
Mayo for the win- diagnosed with chronic eosinophilic pneumonia. It seems to be more rare so I’m not finding much about it on a search or on blogs/chats (even spelling it has been a challenge!!) looking to find others who are managing this and can give me a heads up about the next few years?
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well, I have increased eosinophiles since years but not during my pneumonia
in May since when I have symptoms and all sorts of bad things on CT.
Easiniphilic bronchiectasis(BE) is a special (bad) form of BE
I found something about eosinophilic pneumonia some days ago, but forgot.
9 files eos* in my e:\bro folder from August, so prabably about BE
I was diagnosed in November 2025, I’m wanting to go to Mayo, who did you see?
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1 ReactionI’m so sorry you’re dealing with this disease but glad to meet a fellow warrior. There’s not many of us.
I saw Dr Skalski in Rochester. Highly recommend him although I believe you just get assigned a pulmonologist when you register for an appointment.
How is recovery for you going?
Have you tried the DUPIXENT or Nucala.
I tried Dupixent but it raised my eosinophils to super high levels after three shots (I felt horrible so knew something was wrong). I transitioned to Nucala Dec 2024 and it’s been a miracle drug. Zero eosinophils and no significant signs of CEP inflammation since I started. I also have severe asthma and the Nucala hasn’t controlled it on its own. You can also look at Fasenra. I believe that biologic only requires one shot every 28 days (for CEP you need three shots every 28 days).
@lluth412 I had my4 th shot on Monday, Wednesday I was really tired, got a stuffy nose not sure these are effect from that. How did it affect you, and cough!
The first 6 months I had to block out 24 hours after injections, mainly just fatigued but also some body aches (it didn’t increase coughing or mucus that I notice). Now I know if I can go into the injections well rested, fully hydrated and no alcohol for the 48 hours before I do much better.