Hypereosinophilic syndrome (HES)

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.

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?

Yes Rochester

Anyone diagnosed with HES due to an allergic reaction.

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?

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.

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.

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?

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!

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

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.