Hypereosinophilic syndrome (HES)

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

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.

Good morning, @tiffanyq This must be so frustrating and alarming for you and your daughter to not be finding any relief for her high eosinophil levels.
Eosinophils are a type of white blood cell that protect your body from parasites, allergens, foreign bacteria and outside organisms.

There can be a number of disorders which raise the body’s eosinophil level, including certain infections, allergies and reactions to medications.

I’m sure you’ve been researching trying to find answers. Below are a couple of links to information about Hypereosinophilic Syndrome which help explain the condition and potential causes:

https://www.mayoclinic.org/diseases-conditions/hypereosinophilic-syndrome/diagnosis-treatment/drc-20352856
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https://www.healthline.com/health/hypereosinophilic-syndrome

There are three main types of Hypereosinophilic Syndrome so finding the correct diagnosis will be crucial in getting the proper treatment for your daughter. There are other medications for treatment beyond prednisone.
What are her symptoms? What specialists has she seen?

Hi @tiffanyq, I add my welcome. I moved your question about treating 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 connect with other members like @vkartsona @zenk @montyg @browser3 and others.

Hi @tiffanyq. Have u done exams for parasites? Especially one called toxocara. That was the first thing they searched for while my daughter had very high eosinophils. Unfortunately she was negative on that. But definetely u should do all the parasites exams before u proceed with other exams. This is what they all told us. My daughter’s case was really hard. Her exams showed 79% eosinophils in 140k white cells count. She was treated with imatinib for 4 years. Wishing u all the best!

No we have not tested her for parasites. How do you go about doing that? I appreciate your help.

I have it & a bone marrow biopsy is what determined it finally.

I can’t find anyone anywhere on any site that has HES like me. I’ve been so sick since 2017 when I got diagnosed finally. I have so much wrong with me. Two drs on oncology at Strong Memorial cancer center in Rochester NY & a
Dr at Yale New Haven cancer center in New Haven CT both told me no cure.., but can maintain in Steroids. Life expectancy was tops 5.5 yrs. Well I’m really disabled & getting sicker by the day with this rare blood disease but I’m still here and it’s going on 6.5 yrs 🙏🏻🙏🏻🙏🏻. I have no support system of others with my strain of HES. My team of drs believe now it’s best to just try keep me comfortable & address issues as they arise. I’m no longer working or walking well. The steroids keeping me alive have given me their own set of wonderful bad side effects. I’m on a gerbil wheel of sorts of the HES doesn’t get me the steroids will. I try and stay positive but honestly as my organs are being effected by my mutant eosinophils eating me alive I can say I long to to know if there are others with this. I just now have developed ulcerative colitis from my HES. Already suffering from congestive heart failure. I’ve been seriously septic more than 9 times. My body fights but no immune system so I battle chronic UTI & cellulitis. Other infections too from the HES. The long term steroids have given me drug driven type 2 diabetes & I contracted huge pulmonary embolisms in arteries into lungs and a large dvt being right leg…, have been put me on blood thinners for life . Sooo that’s my short version sad story. Anyone else recognize this short abbreviation of HES. I’m 100 disabled now no longer working and now looking at a hospital bed at home. I tell ya I’m fighting but crap I’m not ready to go yey

Welcome to Connect, @tissyfreeland23. You have an indomitable spirit, my dear. Wow, what you’re all going through with this HES… I’m so sorry to hear you’re having so many health issues associated with this blood condition and the subsequent treatment with steroids. It’s a wonder drug but it has it’s own set of side effects.
From information I’ve posted below for you, steroids are often the first line treatment but there may be other options such medications which can help slow or manage the over production of blood cells such as hydroxuyrea.

Here are the links I mentioned for you:

This is a comprehensive source for info on HES from Uptodate.com. You will need sign into this site for access. I have a subscription but I’m not able to pass it along to you. However, as patient who has HES, I believe you can sign up/sign in at the prompt to be able to read this:
https://www.uptodate.com/contents/hypereosinophilic-syndromes-clinical-manifestations-pathophysiology-and-diagnosis

You mentioned that you had a bone marrow biopsy and that’s how your HES was diagnosied. There are several variants for HES which can cause an over production of blood cells…in this case eosinophils. Did your doctors find the underlying cause for your disorder?

april in 2018 I was on 60 mg of prednisone and 2000 mg of hydroxyurea. I was taking this for about three weeks. It seem to be getting my levels under control but I had no immune system whatsoever. I contracted a headache on a Saturday afternoon and it was so severe it felt like I was being stomped on. I remember asking for a cold compress from my partner and he brought it for me and that's the last I remember after that. Everything is a blur no memory moving forward to Monday at 5 PM when Ed found me on the toilet speaking in gibberish, and when he went to move me, I became violent he had no idea what was wrong with me. Call the ambulance. The ambulance had a hell of a time getting me out of our second floor apartment I was a combative and Ed said it was unbelievable. I've never seen anything like it. They take me to the ER here locally to my local hospital, which is two blocks away and from there they proceed to test me for everything they have no idea what's wrong with me finally they do a lumbar puncture and find out that I have meningitis after much testing and putting me in the ICU. Because I was so near death, they determined that I was suffering from listerial meningitis with Meno encephalitis with sepsis I was in the ICU for seven days. The doctors told Ed to get the family in because I wasn't gonna make it. They didn't think I could make it. They put me in a semi coma to keep me calm and put me on a ventilator. I apparently had an issue and pulled the ventilator out and ripped my esophagus and pulled my front tooth loose so they had to re-intubate me during that time. It was rough. I was covered with cuts, bruises and everything when I came to, I have no memory of it at all. only thing I can remember is my one of my closest friends and her daughter standing over telling me you've got this please fight we love you I don't remember anybody else just those two. It was weird when I finally did come to and they pulled the intubation tube out I was a mess I've never fully recovered from this. It changed my life forever so they took me off the hydroxyurea and that high dosage of prednisone to try to regulate my disease with just the prednisone after I left the hospital with. My recovery was the least of a happy time I spent more time in the hospital than I did at home for the next two years my Mutant eosinophils fills are slowly eating my organ tissues, I'm not a candidate for the other drugs that they have on the market that they use for people with severe asthma I can't pronounce the names of them but I would've tried to put me on them and they don't work for me either so I'm just using prednisone and the doctors have determined just to keep me as comfortable as possible. They've given up on me because they don't know anything about the disease my string apparently does not have the t blast factor That's some strains due, which would be more of a Milo proliferative disorder more like leukemia what I have mimics leukemia in that every bit of my body responds like it. I have leukemia, but leukemia you can cure. You can come back from that this you can't my eosinphil levels cyclically jump from up to no normal to normal. I'm a medical anomaly apparently anyway I wish the hydroxyurea had worked. I wish there was a medication that could help me live longer. I wish there was a medication that could've allowed me to work and still be a productive member of society, but I'm still a member of my family. I still have close friends and family who love me and support me and you're there to lift me up when I have my low days I'm 59 years old. Still vital young in my brain, but my body is turning on Me. I have no immune system still so I have to be very careful and I'm prone to infection and I'm allergic to most IV antibiotics that you use for severe infection So I have that to contend with as well I’m not complaining really I’m just talking about it. I don’t like to be a wow with me person I’m always been very positive that’s probably why I’m still alive anyway after my April 2018 incident, I had many other issues, one of which was an infection in my stomach which ultimately led to his two surgeries, and to open wound vacs on each side of my stomach, it was hell excruciating pain not really sure how it all happened came from a Lovenox shot. My stomach turned black from my pelvic bone to underneath my breast all the way around I blew up like a balloon. I had a hematoma the size of a watermelon. From a Lovenox shot so I could have a colonoscopy because I’m on blood thinners. I’m apparently allergic to it we found that out the hard way let me tell ya oh boy, I thought I could show you pictures your stomach would turn. I was Black literally black never seen anything like it before a hematoma did not subside so they had to go in an operate and remove the dead blood. The wound vacs. We’re on me for 9 to 10 weeks on each side. I had a nurse come in and I have to repack and do the wounds twice a week. But I healed from that without infection, amazingly due to the good care that I had I had a pick line in my neck and IV anabiotic’s over different times at home here administered because I didn’t want to be in the hospital so much I have good doctors and I have a partner who is my caretaker who is become wonderful at his job, and as my companion and supporter I got really lucky there. He doesn’t leave me alone. I guess he takes me to every single doctors appointment. He knows every single thing that goes on he never falters. So I Fight on daily