Hypereosinophilic syndrome (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.

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 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.

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, i am reading your post about your wife and I am wondering if possibly this could be what I have. I also had high WBC with high EOS, swelling of face, neck, legs, back and shoulders. had pain but more weakness than pain. the only testing that came back with issues was my lab work and bone marrow showing lots of EOS and the high WBC. once on prednisone the counts started to decrease.

i was also told by the allergist/immunologist that this is a pre leukemia condition because my bone marrow shows a mutation that is seen sometimes in leukemia and lymphoma however i tested negative for this cancer and the oncologist i went to never stated that. also stated it was not an issue. wondering if anyone else has experienced that as well.

Hello, my grandson recently was diagnosed with idiopathic hypereosinophilic syndrome and its all new to us as well, but they started him on a shot called nucala to bring his eosinophils down because he can't take any form of steroids due to him also possibly having cancer. They said his is also pre leukemia condition and the steroids will mask any cancer if it is growing in his body. I don't understand this and I have searched everywhere to help get answers. Your dr should listen to you about the hair dye because the immunologist told us that certain allergies can rise your eosinophil count.

Did they test him for cancer? They did a bone marrow aspiration for me to look for a few cancers all came back negative. My immunologist also is suggesting nucala for me rather than life term prednisone. Is nucala working for your grandson? What makes them think there is a cancer possibly?

Yes he was tested for cancer but everything came back negative. They only told us that high eosinophils can cause cancer and since his were high for so long its a big possibility. His bone marrow biopsy just came back with very high eosinophils. Every lyphmnode in his body was swollen when he went into the er. He gets another bone marrow biopsy done next month. They were certain he had leukemia when brought into the er but test came back negative. Yes the nucala is working very well. His levels haven't been above 900 with the nucala shot. We give the shot to him from home once a month. He has labs done biweekly now. Everything is so confusing to us they can't give him a prognosis but tell us this will be a lifetime struggle for him and is incurable.

I’m so sorry to hear that about your grandson It mimics what happened to me. However when I was in the ER and admitted I had terrible swelling of my face
Which occurred every day for weeks. It traveled to my neck, shoulders and caused terrible weakness. After many tests and a bone marrow which showed no signs of cancer I was given the diagnosis of HES. Thankfully no organs were damaged from the elevated EOS. I was told that this would be a lifelong condition and that it is considered a pre leukemia condition however in what I have read it is not a common thing to occur. As long as the EOS are controlled the diagnosis should not alter our way of life or for that matter our length of life.

Did they test your grandson for allergies. What caused your grandson to have to go to the ER. Did he have symptoms?