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Any experience with hyper -IgE?

Posted by cdeldeo @cdeldeo, 1 day ago

Seven years ago, a lab test for sarcoidosis showed I had an IgE level of 90,000 (normal is under 214) I have been tested every year at Mayo and last week the result came back at 90,000 again! I have had bone marrow, pet scan and was diagnosed with IgE MGUS but I am wondering if this elevated IgE is affecting my overall immune function. Have not been feeling very well. Fatigue. Squamous cell, basal cell. Overall malaise, dizziness and headache. No respiratory or asthma. Should I have genetic testing? Referral to immunologist? Is there any treatment? Just trying to find out what is going on.

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dlydailyhope | @dlydailyhope | 1 day ago

@cdeldeo
Have you seen a rheumatologist, dermatologist and hematologist? What specialist doctor diagnosed you? You may want to also see an immunologist and get genetic testing if it can help properly diagnose and treat you.

Have you been prescribed prednisone/steroid to help calm your immune system down and reduce inflammation?

1. https://www.msdmanuals.com/professional/immunology-allergic-disorders/immunodeficiency-disorders/hyper-ige-syndrome
2. https://rarediseases.info.nih.gov/diseases/10956/hyper-ige-syndrome/
3. https://medlineplus.gov/genetics/condition/autosomal-dominant-hyper-ige-syndrome/

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1 reply
cdeldeo | @cdeldeo | 1 day ago
In reply to @dlydailyhope "@cdeldeo Have you seen a rheumatologist, dermatologist and hematologist? What specialist doctor diagnosed you? You may..." + (show)
@dlydailyhope

@cdeldeo
Have you seen a rheumatologist, dermatologist and hematologist? What specialist doctor diagnosed you? You may want to also see an immunologist and get genetic testing if it can help properly diagnose and treat you.

Have you been prescribed prednisone/steroid to help calm your immune system down and reduce inflammation?

1. https://www.msdmanuals.com/professional/immunology-allergic-disorders/immunodeficiency-disorders/hyper-ige-syndrome
2. https://rarediseases.info.nih.gov/diseases/10956/hyper-ige-syndrome/
3. https://medlineplus.gov/genetics/condition/autosomal-dominant-hyper-ige-syndrome/

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MGUS diagnosed by Mayo oncologist after bone marrow and pet scan. Dermatologist seems to focus on my squamous cell carcinoma and basal cell on nose. Immunologist referred me to oncologist. Oncologist said all MGUS cases are being managed by PCP who is as baffled as I am. Thank you for the references...will check them out. Appreciate.

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