r/eosinophilic_asthma

30F recently diagnosed. I am taking Breyna and Albuterol before workouts (not 100% of the time, still getting used to the routine), plus Allegra for allergies. My doc suggested Astepro nose spray but I hate it so stopped that. All my allergy tests came back negative even though I’ve been taking allergy medicine since I was 10 years old. They didn’t tell me to stop taking my allergy medicine before the appointment, so sent me for a blood test and said for the blood test, it won’t matter if you’ve been taking allergy medicine. Should I ask to get tested again?

Otherwise, I seem to be triggered by dry air (I currently live in Colorado :( ), alcohol, and exercise of course. All of my attacks happen in the middle of the night if that means anything. Having 1-2 attacks per month since January. The internet says maybe GERD since they’re all in the middle of the night and I usually wake up hungry. How did you find out if you have GERD? How do you determine between “typical triggers” like dust, etc what bothers you?

Hey guys I am 27, I’m in the process of getting diagnosed, my doctor suggested this is what she believes I have. Pumps don’t work, I’m genuinely struggling to breathe all the time And tbh I cry all the time about it, sometimes I sit in my car before going in my house and just cry. I used to be in the gym, I used to go on hikes and was a lover of sports. Now I just sit here depressed and wheezing. Does it ever get better? It’s ruined my late twenties, I’m not on week 16 waiting for an appointment from the respiratory unit.

I was just finally diagnosed with chronic eosinophilic pneumonia. I start my course of prednisone this week. I'm relieved to start breathing better but I hate the side effects.

My husband asked me how he can help / support me. I really don't know. What would you say? What helps you? What have other people done for you?

I'm horrible at asking for help (tbh this is why I probably ended up with an autoimmune condition)

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.