Hypereosinophilic syndrome (HES)

Yes they tested him for allergies and only thing that showed was that he is allergic to pet dander, dust mites, grass and some type of weeds. He was acting lethargic for about two weeks prior to the trip to the er and he was cold all of the time and had headaches and didn't want to eat much. We thought he was tired from playing outside or either coming down with a cold but he never had fever so we kinda brushed it off. He woke up with a knot on his neck the size of a tennis ball so I rushed him to the er. Those were the only symptoms. Once in the hospital he started having fevers and bad night sweats. They tested and treated him for parasites they all came back negative. They have no idea what is causing his high eosinophils. His eosinophil count got up to 98,000 for two weeks and then they finally gave him the nucala shot. They keep telling us this is a serious condition and it's rare in children his age. The Dr's said they have never had a case like this before and have ran so many test on him because they can't find out what is causing it. He sees an immunologist dr a pulmonologist dr and an oncologist monthly and has labs ever other week to check his levels. I have been reading up on idiopathic hypereosinophilic syndrome but I'm still so confused and worried. We want to know what is causing this and why did it pop up out of no where.

Oh I am so sorry. Yes I was told that when they can’t figure out the cause they label it HES. I have been told it is a rare condition and of all the doctors I am seeing I am their first ever HES patient. I heard Nucala is a good drug to lower EOS I am trying to get on it but I have to be diagnosed for six months before I’m approved. So I am on prednisone to keep my levels normal.

As you are I am reading a lot but nothing seems positive about it and there is no good reason given for it to happen. The danger with high EOS is the damage it can cause to our organs. Which is why it is so important to have the EOS controlled. It does for some unknown reason pop up out of no where which to me is so strange. My very thick file was sent to a conference about a month ago where the attendees reran all the bone marrow testing and reevaluated what caused the elevation. Other than coming up with no cancers(thank the good lord) they had no diagnosis other than possibly HES.

I pray your grandson and you find answers and hope that it remains stable with nothing further that happens. Nucala should do that for him.

If I find anything out that could help you I will share. Keep strong.

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

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

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

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.

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?

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

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.

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.