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@mvoge

I am in the process of determining if I have Chronic Eosinophilic Leukemia. My eosinophil count has been 29,000 for 2 years without symptoms. Since December 2022 I have intense itching and rash in large and small patches. Swollen ankles, extreme fatigue and the eosinophil test is 31,000. In the next ten days I will have further labs and possibly an echocardiogram. I hope to have an answer soon because my quality of life has changed significantly.

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Replies to "I am in the process of determining if I have Chronic Eosinophilic Leukemia. My eosinophil count..."

Hello @mvoge. Oh my goodness, intense itching is the worst! I had that with some of my chemotherapy and medications…that was worse than any of the other side effects, I swear! I’m so sorry you’re having to endure that! Does anything bring you relief? I hope you find some answers with your labs and testing that are come in up!

I’m sure you’ve read everything available but I found some sites about possible causes of high eosinophils and how to reduce the levels. I know…if it were only that easy!
https://ayu.health/blog/what-is-eosinophilia-how-to-reduce-eosinophil-count/
https://my.clevelandclinic.org/health/body/23402-eosinophils
Do antihistamines help at all? I had high eosinophil reactions to mosquito bites…do to a heightened immune response from my newly transplant bone marrow cells. I saw an immunologist/allergist who told me one of the first lines of defense after trying Benadryl or Claritin, is taking a proton pump inhibitor such as Pepcid. It worked to reduce the load. Just idea for you.

Good luck with your tests and finding answers!! Let what you find out, ok?

Hi - I have been diagnosed with chronic eosinophilic leukemia and the test that diagnosed it was next generation sequencing test called MMP75 at my hospital but different planes have different tests. This tests for all types of jak2 mutations plus more. I mention this because my first hematologist said i did not have the jak2 mutation but my second hematologist k ew about this other specialized test and unfortunately it showed I had a very rare jak2 mutation and I was undiagnosed with CEL. I also want to mention that my doctor told me it is not good to have high eosinophils so we use various medications to keep them below 2000 (jakifi and hydrea). Now you might have a different kind of CEL with different treatments, but I wanted to share my experience since many places do not perform the special test I mentioned. Good luck and I’m happy to share any other information I have.