Et with calr gene

[iffs]

I finally got my diagnosis i have essential thrombocythemia with calr mutant gene, just started on an asprin platelets are at 690 would appreciate anyones stories on this

Thanks Marie

[hunter5582]

Glad to hear you have a clear diagnosis. For most the 22 years that I had ET (before it progressed to PV) I did fine on aspirin-only. many people with ET do not need more than aspirin. treatment is about controlling actual symptoms, not arbitrarily trying to make platelet levels look "normal." The issue is about how your blood cells behave, not how many platelets you have.

Migraine is a MPN-related symptom. Not sure it the Amitriptyline worked for you. If not there are other medication options. I have a different form of migraine activity due to a brain surgery. Ubrelvy (a CGRP inhibitor) works great for me. My niece is also taking a CGRP inhibitor and says it has transformed her life.

If you are interested in learning more about the CALR mutation and what it means, this presentation is a good place to start.

youtube.com/watch?v=zHwTIJb...(Not working as expected?)

All the best on the next stage of your MPN journey.