Not ABPA (we think) but undiagnosed a... - Aspergillosis and...

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Not ABPA (we think) but undiagnosed and afraid in Santa Clara, CA

Katera8 profile image
6 Replies

About five months ago I came down with a terrible chest cold which my pulmonologist said caused post viral asthma. Since then I have been so sick- shortness of breath, coughing up bright yellow balls of mucus, intense chest & back pain, and lost 40 pounds. Sometimes the mucus is so thick it glues my throat shut when I cough it out and I choke. I also wake up gasping for air frequently. Anyone have any tips for airway clearance techniques or huff coughing?

The Doctors don't know what it is and has delayed anti fungal treatment, though my sputum culture was postive for Penecillium. My Doctor says that I don't have ABPA because my IgE levels are too low (594), my blood test was negative for Aspergillus and no Aspregillus in the sputum, and I don't have bronchiectasis (yet). I have read that Penecillium can be a rare cause of ABPA but no one will listen to me I am on a seemingly endless dose of Prednisone and they just started me on Xolair. When I try to taper down from the Prednisone I have hours long asthma attacks and intense pain in my chest and back. I was hospitalized for my asthma and apparent sinus bradycardia last week and even the ER doctor didn't know what was causing my symptoms. My eosinophils were high too. I just want this all to stop! Thanks,

Kati

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Katera8
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6 Replies
Skleiner profile image
Skleiner

When I am like that, prednisone for a few months helps me. I start with 40 mg for 1week, then slowly go down every week until I reach 5 mg.

Katera8 profile image
Katera8 in reply toSkleiner

Yes! Prednisone is the only thing that helps right now. I started at 40 mg and right now I am stuck at 15. Tried to go down to 12.5 yesterday and had asthma for three hours. I’m seeing my doctor tomorrow to follow up so hopefully she will be able to help.

Skleiner profile image
Skleiner in reply toKatera8

Sometimes I have to stay on prednisone longer to clear lungs. I will ask the doctor to go up in mg or stay with a certain dosage longer.

suraksha69 profile image
suraksha69 in reply toKatera8

Once you taper oral prednisolon,simultaneously switch to inhalation steroid, which requires much lesser dose and no systematic (other organs) impact. Or may be countinue with low dose oral steroid and inhalation doses. Symbicort or foster inhalation has good impact.

GAtherton profile image
GAthertonAdministratorFungal Infection Trust

A total IgE less than 1000 but more than 500 might indicate severe asthma with fungal sensitisation - see life-worldwide.org/fungal-d...

suraksha69 profile image
suraksha69

Hi!! I am a doctor and passing through . For thick sputum take "ACC long "dispersable tablet every day twice. Add tablet mucosolvent 75 mg as well. Start with less dose if any heart problem. Usually a safe drug. Take your GP consultancy for same if needed. Its just a suggestion...not prescription

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