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HES Diagnosis - help!!

Posted by olihoban1 @olihoban1, Dec 5, 2025

Hi guys,

I have been diagnosed with this disease and stuffered a lot as a result of it. I have been managed on various immunosuppressants (Azathioprine. Mercaptupurine, Methotrexate) but I have recently had a flare up and I’m needing some help as I feel so ill at the minute. My gastro symptoms are crushing pains in my abdomen and a lot of committing and diarrhoea. I’ve been given prednisone but it’s not helping much does anyone else have any advice on what I can do to try and feel better?
This disease is miserable 😞 so hard when not many people know about it.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

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Mentor
Lori, Volunteer Mentor | @loribmt | Dec 6, 2025

Hi @olihoban1 It’s horribly lonely when you have a diagnosis that isn’t shared with many other people. I’m so happy to see you here. There are a number of members in Connect who have been diagnosed with Hypereosinophilic syndrome themselves or have loved ones/family members experiencing the side effects of this condition where too many of a specific type of white blood cell, eosinophils, exceed their normal life span. These excess cells can build up in organ tissue and cause a host of issues.

I’ve posted a links below to an HES discussion where you’ll meet members such as @vkartsona @zenk @donnahes and others.
~ Hypereosinophilic syndrome (HES)
https://connect.mayoclinic.org/discussion/hypereosinophilic-syndrome/
What types of testing have you had to determine the cause of your HES? Some possible causes can be autoimmune conditions, allergies, parasitic infections requiring a stool sample, or even genetic mutations. Have you had a bone marrow biopsy to see if there’s any underlying bone marrow condition?

REPLY
1 reply
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vkartsona | @vkartsona | Dec 6, 2025
In reply to @loribmt "Hi @olihoban1 It’s horribly lonely when you have a diagnosis that isn’t shared with many other..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Hi @olihoban1 It’s horribly lonely when you have a diagnosis that isn’t shared with many other people. I’m so happy to see you here. There are a number of members in Connect who have been diagnosed with Hypereosinophilic syndrome themselves or have loved ones/family members experiencing the side effects of this condition where too many of a specific type of white blood cell, eosinophils, exceed their normal life span. These excess cells can build up in organ tissue and cause a host of issues.

I’ve posted a links below to an HES discussion where you’ll meet members such as @vkartsona @zenk @donnahes and others.
~ Hypereosinophilic syndrome (HES)
https://connect.mayoclinic.org/discussion/hypereosinophilic-syndrome/
What types of testing have you had to determine the cause of your HES? Some possible causes can be autoimmune conditions, allergies, parasitic infections requiring a stool sample, or even genetic mutations. Have you had a bone marrow biopsy to see if there’s any underlying bone marrow condition?

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@loribmt hi. Sorry to hear that you are suffering. Each case is so different. The doctors have treated my daughter with immatinib. But she was 5 years old. I do not know if that will help you but maybe you should discuss it with your doctors.

REPLY
1 reply
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Mentor
Lori, Volunteer Mentor | @loribmt | Dec 6, 2025
In reply to @vkartsona "@loribmt hi. Sorry to hear that you are suffering. Each case is so different. The doctors..." + (show)
Profile picture for vkartsona @vkartsona

@loribmt hi. Sorry to hear that you are suffering. Each case is so different. The doctors have treated my daughter with immatinib. But she was 5 years old. I do not know if that will help you but maybe you should discuss it with your doctors.

Jump to this post

Hi @vkartsona Thank you for your concern and replying about your daughter’s experience with HES and the success she’s had with immatinib!
I think you may have misunderstood that my reply was to @olihoban1, a new member who has been diagnosed with HES. I had mentioned your name, along with a few others who have possible insights for @olihoban1 as well.
I’m just the mentor in the blood cancer support group so I do my best to bring other members together who share a similar diagnosis.
How is your daughter doing? Her diagnosis was a few years ago. Did the immatinib treatments need to be repeated or has she remained in remission?

REPLY
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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 17, 2025

@olihoban1, how are you doing? Has the flare calmed? How are you managing the GI issues?

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