Hypereosinophilic syndrome (HES)

Yes Rochester

Hellow @browser3 Welcome to Mayo Connect. You were recently diagnosed with HES ~ Hypereosinophilic Syndrome. We have a few members in our forum who have experience with this rather rare blood disorder. Below I’ve posted a link where you can connect with members @donnahes @mraymond @vkartsona @zenk @aer @jkupratis and others who share their experiences with HES or have family/friends with the condition.

~Hypereosinophilic syndrome.
https://connect.mayoclinic.org/discussion/hypereosinophilic-syndrome/
Mayo Clinic has this information on their main site:
https://www.mayoclinic.org/diseases-conditions/hypereosinophilic-syndrome/diagnosis-treatment/drc-20352856
As for a length of time for your initial consult, testing and diagnosis at Mayo, that’s difficult to predict. The first thing you will need to do is request an appointment. You can do this without a doctor’s referral but sometimes it helps to speed things along when a doctor sends in the request.

This link will take you to Mayo’s home page where you’ll see the option for the 3 Mayo Campuses…Rochester, MN Phoenix, AZ Jacksonville FL
A phone call will get you started! The coordinator on the phone will take it from there to let you know what’s required for paperwork, insurance, etc.
http://mayocl.in/1mtmR63
From my experience it’s good to plan for at least 3 days unless otherwise suggested, when your appointment is confirmed. You’d most likely be seen by a specialist to determine the type of testing required to help with a diagnosis. Things at Mayo can happen very quickly with scheduling subsequent tests sometimes the same day or the next. So allow yourself a few days.

Most hotels, at least in Rochester, center their service around patients at the clinic and are quite flexible with cancelations and extensions on rooms should you need to make changes.

Do you have a preferred campus?

I was diagnosed with HES in January 2023. and have been on Nucala since February. My cardiologist recommended I get a work up at the Mayo Clinic. How long does that take ( one day, several days, a week?). What is involved? Thank you.

Once Hematologist diagnosed with Lymphatic HES using blood tests and bone marrow biopsy results he put me on monthly Nucala injection since Dec 2022 after insurance approval. Its very costly (25,000$ for 300mg per month dose) covered by insurance. It works for me and keeping Eosinophils at 0, now I stopped taking Prednisone. I m replacing Nucala with Pegasys(Interferon alpha 2a) now as in India Nucala is not available and I am moving out of USA in May 2023.

Hi thanks for replying. I saw a dermatologist for the last 3 years and Im pretty sure that guy would of let me die. He told me it was eczema for 2 years until it got so severe that prednisone barely helped anymore. He wanted to put me on Dupixent for eczema. Thats when I went to an allergist and he told me I likely have HES. The allergist says he will treat me but I have to be diagnosed by first. Going to check with my insurance, thats a good idea. Hopefully someone will see me

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?

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.

An internal medicine is a doctor who only treats adults. It is worth a try. However, have you seen a dermatologist since you have this rash?

Can you appeal to your insurance to see a hematologist out of network?

Best wishes, Eileen

Can an internal medicine doctor diagnose Hypereosinophilic syndrome?
I have had a severe full body rash for 8 months and swollen inguinal lymph nodes for 3 months. I had an ultrasound and biopsy on my lymph nodes and they said its not cancer. My allergist thinks I have hypereosinophillic syndrome (HES) and sent me to a hematologist. I dont have a gene mutation and was told by my allergist I need a bone marrow biopsy to be diagnosed. They took 3 weeks to review my case and told me they would not see me because they do not diagnose or treat anything to do with high eosinophils. This clinic has the only hematologists in my insurance network. My PCP and allergist say they cant do anything else, and that a hematologist has to diagnose me. Should I see an internal medicine doctor? Any other way to get diagnosed? I have never been so miserable and desperately need help

Thank you I would definitely appreciate any information on this you could pass along to me.