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Hypereosinophilic syndrome (HES)

Blood Cancers & Disorders | Last Active: May 14 4:41am | Replies (59)

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@colleenyoung

Hi @camayeron, I moved your question about 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 easily connect with fellow HES members like @vkartsona @zenk @montyg @browser3 and many other members who also have this autoimmune condition.

As I'm sure you've read hypereosinophilic syndrome (HES) is a group of blood disorders that occur when you have high numbers of eosinophils — white blood cells that play an important role in your immune system. I'm not surprised that you white blood cell counts are out of whack. I common symptom of HES is a cough too.

What other conditions are being considered? Has a treatment option been suggested?

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Replies to "Hi @camayeron, I moved your question about hypereosinophilic syndrome (HES) to this existing discussion: – Hypereosinophilic..."

The treatment option I have just begun is a heavy dose of prednisone that reduces weekly down to 10 mg a day in about a month. I also have 1 mg of Mometasone that goes into the saline rinse I use daily. I’m not sure if it’s muscular or a cracked rib, but there is a LOT of pain on my left side from coughing which makes sitting and movement difficult at times. I have already been on antibiotics to remove sinus infections. I began at Mayo July of 2022, but it wasn’t until I returned with more severe problems in May of 2023 that I was treated more radically. I had sinus surgery in July which was thought to be a solution, but the severity of my symptoms and condition exploded two weeks after surgery. That is when I had repeated blood tests, saw Andrea Gosch (ROCKSTAR) in the ENT department who took my case and pursued various avenues, consulting pulmonologist, hematology, and I saw an allergist at home. One very important discovery came out of the last visit. The allergist had put me on Dupixent a costly self-injection given every two weeks which was supposed to be a good answer to helping with the sinusitis. Andrea called us on our way home to say DO NOT take that third dose of Dupixent that was scheduled for that day. Right now it could have led to heart and/or organ failure. Pretty important information to know!