Hypereosinophilic syndrome (HES)

oh one more thing. about one week out of the hospital i ended up at the urgent care with a urinary tract infection which was treated with antibiotics. my eosinophils have been in line for about 3 weeks now. I continue to take prednisone but am now only on 10 mg and have labs drawn weekly to watch the levels.

Hi thank you Colleen. Oh it is such a long story. But i suppose worth typing it out. So around mid September i notice that the bottom lower cheek on the right side was puffy. it was swollen on the inside and puffed out on the outside. i went to the dentist thinking maybe it was dental related. he said it might be TMJ so i just let it go but within a couple days it got worse the swelling traveled to under my chin. During this time i went to my primary, an oral surgeon, the ER twice, an allergist, an autoimmune doc, a gastro doc an all during this month long process i became more and more weak with an inability to pass much urine, pain in my low right back and weakness in my arms and legs. my face and neck continued to swell and i had hives on occasson on my scalp and neck. During these times throughout the month i had labs drawn and each time my eosinophils were elevated, they began at 6 then went to 55. on the day they were 55 i ended up in the hospital. My urine tests all were abnormal with lots of protein and an indication of an infection. During my admittance in the hospital a CT scan was done, two MRIs, an endoscopy and a bone marrow aspiration along with multiple lab draws. the CT scan and MRI both showed a thickened wall of the bladder which was evaluated to be due to some sort of infection and to match to the urine tests. the doctor skipped over that and never addressed it. other than this the only thing that was abnormal was my blood with elevated eosinophils of 76% on the worst day eosinophil abosolute i believe was at 13. the bone marrow results showed no signs of cancer but did show the elevated eosinophils. Once they took the marrow they began a treatment with prednisone 40 MG and within 12 hours it decreased the 76% to 49% i was then released after 5 days in the hospital. I have been to multiple follow up appts and each time i have asked if my allergy to hair dye could cause it. they seem to ignore this. What they don't understand is that i have dyed my hair for years every two weeks and each time would get hives and welts on my scalp and neck. I also explained that for years every couple weeks or so i would get these feelings of having the flu and i never related it to my hair dye sessions but when i really think about it i would get these episodes every couple weeks and i was dying my hair ever couple weeks. when i look back at the hundreds of photos that i took during the time i was sick in september and october the photos are so clearly an allergic reaction of some sort. I just am not sure how to get this message across. The doctor have decided on this diagnosis and have advised that this will be a lifelong medicated process. I am willing to accept this diagnosis if i know for certain it is accurate. thank goodness no organs are damaged from the high eosinophils at this time.

Welcome @donnahes,
I moved your question about HES to this existing discussion:
- Hypereosinophilic syndrome https://connect.mayoclinic.org/discussion/hypereosinophilic-syndrome/

I did this so you can read previous posts and connect easily with members like @vkartsona @zenk @aer @jkupratis @mraymond, who have experience with hypereosinophilic syndrome (HES).

Donna, you mention that you're not completely confident that HES is an accurate diagnosis for you. Would you mind sharing what symptoms you experience? What testing led to the diagnosis of HES?

Hi everyone. I’m new in this site. I was recently diagnosed with HES and am
Wondering if anyone has a similar diagnosis and could share their story. It is so new to me and I’m unsure of it is accurate. I’m trying to hard to figure this out.

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.

@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?

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.

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?

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.

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.