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Hypereosinophilic syndrome (HES)

Blood Cancers & Disorders | Last Active: May 14 4:41am | Replies (59)

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@kskhes

Act quickly. I have HES since May 2021. Started with a rash on arms and ankles, swollen ankles and ended up with severe blood clots in my right foot arteries where due to delay in diagnosis I had leg bypass surgery on Dec 2021. I would recommend to be on blood thinners right away if you see issues like pain and tingling sensation on legs. Your symptoms could be different. I live in Bay Area any my Hematologist diagnosed Lymphotic HES based on bone marrow biopsy. I was on steroids last 10 months and now trying Nucala and interferon alpha 2a injections.

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Replies to "Act quickly. I have HES since May 2021. Started with a rash on arms and ankles,..."

Thank you for the reply! I have had some issues with my feet swelling but its been minor. I wish I could act quickly I am stuck with no one willing to treat me. Hoping this internal medicine doctor can diagnose me. I am taking prednisone now but it barely helps. Does the Nucala help you? Did you have to wait 10 months because of insurance?