← Return to Are the symptoms in my head? Polycythemia Vera + Mastocytosis (age-23)

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@isabellereine

Thank you so much for your kind reply!

I’ve been on a med similar to Ayvakit, Imatinib, and it did tear my stomach apart, but remarkably helped my MCAS symptoms. If I get relief from itching, I think the GI symptoms will be a reasonable trade off.

I’m just still concerned about the Polycythemia piece. I was thinking of trialing Hydroxyurea and monitor symptoms, labs, and imaging; but I know there’s more of a chance of it not working.

It’s a part of the puzzle that just seems so out of place, with no explanation. It’s not primary nor secondary.

Additionally, the symptoms seemed tied to the Polycythemia, considering the timing of everything. With my bone marrow showing hypocellularity, it’s quite clear my body didn’t read the textbook!

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Replies to "Thank you so much for your kind reply! I’ve been on a med similar to Ayvakit,..."

Your doctor has pretty much ruled out PV, even with the bone marrow biopsy. Hydroxyurea (HU) is a type of chemotherapy that can be very beneficial for patients with PV. However it’s not a medication you want to take if it isn’t necessary. It also comes with its own possible side effects. So maybe it would be better to take the Ayvakit your doctor recommended for the mastocytosis to rule out one suspected cause of your symptoms before moving onto HU.

If you read through the article link I gave you from Mayo for mastocytosis, the signs and symptoms of systemic mastocytosis may include:

Flushing, itching or hives
Abdominal pain, diarrhea, nausea or vomiting
Anemia or bleeding disorders
Bone and muscle pain
Enlarged liver, spleen or lymph nodes
Depression, mood changes or problems concentrating

Also, further down “systemic mastocytosis can affect your bones and bone marrow…” which may account for the hypocellularity.
There may be validity for your doctor to suspect mastocytosis based on your symptoms and test results.

But I’m also a firm believer that a person just has to follow their gut, and yours is staying PV. Whether you have PV or not, or if your itching and enlarged spleen are side effects of the mastocytosis or another condition, I’m getting the feeling that you’re not quite trusting your hematologist.

I think maybe seeking a second opinion from a larger teaching hospital such as Mayo Clinic might be a good thing for your peace of mind and getting a firm diagnosis.