[Kathleen Kearns]

Hi Tracey,
I have an MDS/MPN U, RARS T. I have elevated platelets and low red blood cells. It is tricky, trying to balance the two disorders that contradict each other. What exactly have you been diagnosed with? Where do you live?
Kathy

[Kathleen Kearns]

Marcia, You’re on a pretty low dose of Jakafi, so that’s good that it’s able to keep your platelets down. I understand the frustration of the low hgb. I hate having to take a medicine (Aranesp) to counteract the effects of another medicine (Jakafi). When did you start getting Procrit shots? My dr. doesn’t seem to think the Aranesp is working, but wants me to continue as long os they’re covered by insurance. I started getting Procrit shots in January 2017, and then I switched to Aranesp in June, 2017.

[Kathleen Kearns]

Acquired Von Willebrand disease can occur with elevated platelents. It’s a bleeding disorder. How long ago were you diagnosed? I’m so pleased to finally make a connection with someone else with RARS T. It’s so unusual and tricky to treat. What are your platelet levels?

[Kathleen Kearns]

I take 25 mg, twice daily. I was receiving Procrit shots, but they weren’t working, so I started getting Aranesp shots. Have you been checked for acquired Von Willebrand disease?

[Kathleen Kearns]

Robert,
My hematologist is suggesting I take Jakafi, as well. I have RARS T, refractory anemia with ringed sideroblasts with thrombocytosis. That mouthful means I don’t make enough red blood cells, but I make too many platelets. I’m currently on Hydroxyurea to lower the platelets, but when I’m on a dose that lowers them enough, my hemoglobin gets too low. What have you been diagnosed with?

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