Hypereosinophilic syndrome (HES)

Teen daughter has HES. Eosiniophils 1500, fatigue. unknown cause?
My teen daughter has HES. Her eosinophils have been elevated for over a year. She has had bone marrow biopsy and ECHO, they are unable to find the cause. We tried a course of steroids and it only decreased her eosinophils to 1100. Would appreciate any info.

So glad to hear you are finding results for your heart!

My HES affected my heart. Nucala has been approved by the FDA to treat HES and I take 300 ml a month. (three 100 ml shots). First time February and it has ben terrific. My eosinophils have been normal this whole time. I also have eosinophilic myocarditis. Up until now I have had zero side effects. Just wondering if anyone else has had an itching problem. Working on process of elimination to get it to stop.

Can you tell me about Nucala, why it was prescribed to you, and what its affects has been on you?

The treatment option I have just begun is a heavy dose of prednisone that reduces weekly down to 10 mg a day in about a month. I also have 1 mg of Mometasone that goes into the saline rinse I use daily. I’m not sure if it’s muscular or a cracked rib, but there is a LOT of pain on my left side from coughing which makes sitting and movement difficult at times. I have already been on antibiotics to remove sinus infections. I began at Mayo July of 2022, but it wasn’t until I returned with more severe problems in May of 2023 that I was treated more radically. I had sinus surgery in July which was thought to be a solution, but the severity of my symptoms and condition exploded two weeks after surgery. That is when I had repeated blood tests, saw Andrea Gosch (ROCKSTAR) in the ENT department who took my case and pursued various avenues, consulting pulmonologist, hematology, and I saw an allergist at home. One very important discovery came out of the last visit. The allergist had put me on Dupixent a costly self-injection given every two weeks which was supposed to be a good answer to helping with the sinusitis. Andrea called us on our way home to say DO NOT take that third dose of Dupixent that was scheduled for that day. Right now it could have led to heart and/or organ failure. Pretty important information to know!

Hi @camayeron, I moved your question about hypereosinophilic syndrome (HES) to this existing discussion:
– Hypereosinophilic syndrome (HES) https://connect.mayoclinic.org/discussion/hypereosinophilic-syndrome/

I did this so you can read previous posts and easily connect with fellow HES members like @vkartsona @zenk @montyg @browser3 and many other members who also have this autoimmune condition.

As I'm sure you've read hypereosinophilic syndrome (HES) is a group of blood disorders that occur when you have high numbers of eosinophils — white blood cells that play an important role in your immune system. I'm not surprised that you white blood cell counts are out of whack. I common symptom of HES is a cough too.

What other conditions are being considered? Has a treatment option been suggested?

I perhaps have reached one diagnosis, though others are also mentioned. Is anyone else being diagnosed or treated for hypereosinophilia. I have a HORRIBLE chronic cough and sinusitis and other parts of my white blood cell counts are out of whack.

Thank you for moving my post. A family member was diagnosed with HES but we were never told how they got it. As far as we know no other family member has had it. I did not know there are different varieties of HES. This is all new to me.

Welcome, @montyg.
According to Mayo Clinic's information (https://www.mayoclinic.org/diseases-conditions/hypereosinophilic-syndrome/symptoms-causes/syc-20352854)
"Some varieties of hypereosinophilic syndrome tend to run in families. Other types have been associated with certain types of cancers, infections or other health problems."

It sounds like HES in your case may be related to an allergic reaction. Do I have that right? Can you elaborate?

Anyone diagnosed with HES due to an allergic reaction.