Hypereosinophilic syndrome (HES)

Hello @vkartsona, welcome to Connect. Was your daughter diagnosed with hypereosinophilic syndrome, or is that the way they are leaning? Here is what Mayo Clinic has to say about this syndrome, https://www.mayoclinic.org/diseases-conditions/hypereosinophilic-syndrome/symptoms-causes/syc-20352854. In that description, Mayo Clinic does mention the use of corticosteroid, but also mentions that it is important to determine the type and cause of HES first. @vkartsona, if you are comfortable sharing, has this been determined for your daughter?

Dear Justin, thank you for your reply. unfortunately we have not determine the cause of the HES. there is no gene mutation and the bone marrow was negative. she took albendazole for the parasites although all the examinations for the parasites were negative. nevertheless, the white blood cells started very slowly to decrease after 3 weeks by the day she ended the therapy (from 50k to 38k). she has taken any corticosteroid yet since they have not found the cause...

Does anyone have hyper eosinophilla ? Is a bone marrow biopsy necessary for further treatment?

Hi @zenk, you'll notice that I moved your message to this existing discussion about Hypereosinophilic syndrome (HES) so that you can meet @vkartsona. According to Mayo Clinic https://www.mayoclinic.org/diseases-conditions/hypereosinophilic-syndrome/diagnosis-treatment/drc-20352856 a bone marrow biopsy is not part of the first line of testing for a diagnosis or to develop a treatment. First they need to find out the cause. It is genetic or associated with a cancer, infection or other health problem(s).

Has the cause already been determined through tests, such as blood tests, allergy tests, stool tests or genetic testing?

My wife has a type of hypereosinophilia, it's called Gleich syndrome. It is a rare disorder. High wbc, high eos but with swelling in muscles of extremities, sometimes painful, sometimes not. It does not cause organ. It's basically episodic angioedema. Blood tests, mri's, ultrasounds, skin muscle biopsies and bone marrow biopsies were done. She takes prednisone for it.

I was diagnosed with HES 5 years ago after being diagnosed with breast cancer. I was always very healthy until then so did not need blood tests regularly like they want with a cancer patient. They then discovered I had extreme lives of eosinophils. All other test ruled out parasites, infections, genetics, allergies, etc. I was seen by some great doctors at Mayo Clinic and they found eosinophils tissue in my esophagus. But I do not have any other symptoms. Praise God! I may have had this for many many years and it went undetected. My doctors test my blood every 8 weeks and also watch my heart. I hate think some day HES will start to attack my good organs. I'm not sure is anyone else has experienced no symptoms. If so, I'd love to hear from you.

Welcome @jkupratis. I'm tagging @zenk and @aer to make sure they saw your post. It's great that you are being monitored so closely, but I can also understand how this makes you hyper-aware (bad pun) of your health. How are you doing?

My 6 yr old grandson was recently diagnosed with idiopathic hypereosinophilic syndrome. He was hospitalized 6 weeks and underwent a bone marrow biopsy, lyphmnode biopsy, genetic testing and pet scan with no findings. Every lymph node in his body was swollen and so was his spleen. His wbc was 98,000 and eosinophils 78,000. They started him on nucala shot and his levels dropped 10k in 24 hrs after injection. His levels were rising and dropping for two weeks after his first dose but stayed above 1500. He now has been on the shot for 5 months and gets weekly labs done his eosinophil count is now 0.9. Oncology doesn't want him taking steroids because they think he might have a type of cancer brewing in his body and the steroids can mask it. All I'm told is this is a rare disease with not much more information except let's take it day to day. They found nodules in his lungs in July and he follows up with pulmonary this month for another CT scan to check if they are still there. Oncology is going to do another bone marrow biopsy and a spinal tap next month. Does anyone have information on this disease? I'm confused and scared for the future of my grandson.

@mraymond, you must be so worried for your grandson. I bet you wish you take this condition on in his stead.

I moved your message to this existing discussion:
- Hypereosinophilic syndrome: https://connect.mayoclinic.org/discussion/hypereosinophilic-syndrome/

I did this so you can connect with @vkartsona, whose 5 year daughter also has hypereosinophilic syndrome, and other members like @zenk @aer @jkupratis. You can also read previous posts for more information about the disease from Mayo Clinic.

How is your grandson doing with all the hospital visits and poking and prodding? How are his parents holding up? Do you live far from them?

Yes I wish I could take this away from him. He is so tired of all the needles but he is a trooper. My daughter is a single parent so her and my grandson live with me. Thank you for moving my message to the right group. This is all so new and confusing to me.