u/OkOriginal8646

I was diagnosed with **chronic eosinophilic pneumonia** a few years ago and was wondering if anyone else’s disease behaves like mine.

Before I was diagnosed and treated, my coughing fits were severe and could last for hours. They’d leave me completely wiped out afterwards with extreme exhaustion, weakness, muscle pain, feeling faint, and a sore throat. I’d also cough out all this mucus that seemed to give me relief. I was eventually treated with 100 mg prednisone after being hospitalised for a coughing fit that eventually closed my airway. The prednisone made a huge difference.
Over time, my doctors noticed that my flare-ups seemed to be linked to my menstrual cycle. They started me on a progesterone-only contraceptive, and it completely stopped the major flares, which made them suspect thoracic endometriosis. However, I later had an MRI that didn’t support that diagnosis, so I’m left without a clear explanation.

Now, instead of the massive flares I used to get, I seem to have these smaller inflammatory episodes. I get:
profound fatigue and weakness
feeling faint/lightheaded
heavy, tired eyes
sore or irritated throat
chest tightness
a general feeling that my body is “inflamed”

Sometimes I develop a cough, sometimes I don’t. But even when I do get a cough, I still experience these symptoms both before and after it, and the fatigue can be the most debilitating part.
Has anyone else with chronic eosinophilic pneumonia experienced anything similar? Do you get these weird inflammatory episodes without obvious lung symptoms, or have hormonal triggers that seem to influence your disease?
I’m not looking for medical advice or a diagnosis—I’m just curious whether anyone with CEP has had a similar pattern, because I haven’t come across many stories that sound like mine.

I was diagnosed with chronic eosinophilic pneumonia a few years ago and was wondering if anyone else’s disease behaves like mine.

Before I was diagnosed and treated, my coughing fits were severe and could last for hours. They’d leave me completely wiped out afterwards with extreme exhaustion, weakness, muscle pain, feeling faint, and a sore throat. I’d also cough out all this mucus that seemed to give me relief. I was eventually treated with 100 mg prednisone after being hospitalised for a coughing fit that eventually closed my airway. The prednisone made a huge difference.
Over time, my doctors noticed that my flare-ups seemed to be linked to my menstrual cycle. They started me on a progesterone-only contraceptive, and it completely stopped the major flares, which made them suspect thoracic endometriosis. However, I later had an MRI that didn’t support that diagnosis, so I’m left without a clear explanation.

Now, instead of the massive flares I used to get, I seem to have these smaller inflammatory episodes. I get:
profound fatigue and weakness
feeling faint/lightheaded
heavy, tired eyes
sore or irritated throat
chest tightness
a general feeling that my body is “inflamed”

Sometimes I develop a cough, sometimes I don’t. But even when I do get a cough, I still experience these symptoms both before and after it, and the fatigue can be the most debilitating part.
Has anyone else with chronic eosinophilic pneumonia experienced anything similar? Do you get these weird inflammatory episodes without obvious lung symptoms, or have hormonal triggers that seem to influence your disease?
I’m not looking for medical advice or a diagnosis—I’m just curious whether anyone with CEP has had a similar pattern, because I haven’t come across many stories that sound like mine.