Does anyone deal with chronic headaches with ET JAK2?

[Mirror368]

I was diagnosed in June 2022 with ET JAK2. I have taken 500 mg Hydroxyurea starting daily, then every other day, 3x a week, and 4x a week. I had breaks between each timeframe. This time I went off it for a month because of headaches. However, the headaches continue daily. Usually with a month off my platelets would jump up somewhat but this time I went from 523 644.

I was planning on starting low dose Anagrelide, .5 mg 2x daily, after the month off HU. However, I am aware headache and palpitations can be an issue with it, I also have Paroxysmal AFib so I take a blood thinner. I see my hematologist tomorrow

I feel headaches are taking over my life. Any suggestions? Eileen

[hunter5582]

Headaches are a common ET microvascular symptom. Headaches can also be an adverse effect from HU. Note that it is not the number of platelets that is the issue when the ET is the cause. Headaches are a microvascular issue cause by abnormal blood cell behavior.

The fact that the headaches continue after a month off of HU suggests that the HU is not the cause. It is worth noting that headaches can occur for other reasons. Many people who do not have MPNs experience migraine and other types of headaches. Suggest that consultation with a headache specialist (often a neurologist) would be a good idea.

I would be cautious with anagrelide in the presence of an existing AFib. This is a list of the contraindications for anagrelide from ePocrates.

long QT syndrome, congenital

QT prolongation

QT prolongation family hx

torsades de pointes

torsades de pointes hx

ventricular arrhythmia

ventricular arrhythmia hx

bradycardia

MI, recent

CHF

Suggest that you review all of the cytoreductive options for ET with your hematologist. Pegasys would be on the list along with HU and anagrelide. Jakafi is also used off-label for ET but is difficult to get authorized due to the expense.

Please let us know what you decide and how things go.

[Mirror368 in reply to hunter5582]

Thank you Hunter. I had to look up QT Prolongation, etc. Both of my parents had migraines. Prior I have never had other than an occasional headache where I took two Motrin and it was gone. I can only take Tylenol because of being on Eliquis. I had a stress test and Echocardiogram done in 2023…results “normal for my age.”

I see my hematologist today and my primary on April 17. I will ask for their opinions on a headache specialist.

Thank you again, Eileen