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Are the symptoms in my head? Polycythemia Vera + Mastocytosis (age-23)
Blood Cancers & Disorders | Last Active: Dec 27, 2024 | Replies (7)Comment receiving replies
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.
Replies to "Your doctor has pretty much ruled out PV, even with the bone marrow biopsy. Hydroxyurea (HU)..."
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Yes, I definitely fit the systemic mastocytosis symptoms, and it’s been brought up before, but just labeled as Mast Cell Activation Syndrome (MCAS), which I also definitely have. The fact that one set of labs had normal RBC is winning my hematologist over but not me. Labs fluctuate all the time, especially near IV saline infusions.
My PCP will fill out a form for Mayo’s second opinion program, where I’ve been denied and accepted lol, but hopefully it’s a simple enough case, ignoring my medical history.
My hematologist can’t prescribe the Ayvakit since I don’t meet the WHO or ICD-10 criteria, but my allergist, who can make a case of using this for MCAS, will have to be the one writing the prescription. My follow-up with her is 1/13. However, I did email my nephrologist, since there is a renal impairment warning on the Ayvakit. The second option is Imatinib, which is fine kidney wise since I was on it shortly, and the third he suggested was Hydroxyurea. It’ll definitely be a “collaborative” effort between hematology, allergy, and nephrology.
I was diagnosed with MCAS long before it was separated from being apart of hEDS symptoms, since my doctor had connections at NIH. The fact systemic mastocytosis has been denied for over 10 years is baffling, I think. My gut isn’t always right…the epilepsy was a shock to everyone and I was quite wrong, I certainly have it! And my bloodwork still isn’t 100% consistent with lupus and/or MCTD, but my rheum tests me every year since we both strongly believe that it’ll start to change. It’s also strange that the symptoms came with the polycythemia, but I think I’m the only one hung up on that. But when that hypocellularity came back, it really defeats the case. I’m new to hematological issues, and I most certainly didn’t attend medical school, so it’s still a bit new and I’m still learning everyday. There’s so much overlap with pre-existing conditions, it’s making me quite frustrated. Having your perspective, a patient, is invaluable, though, and I really appreciate you taking the time to explain!