Anyone living with Essential Thrombocythemia with JAK2?

Headaches are definitely a side effect. I got them when I first started taking HU 500 mg twice a day, 7 days a week. My Heme/Onc started decreasing my dosage as my platelet numbers came down and now, with my platelet count around 200, I take it twice a day, four days a week. As the dosage decreased, the headaches did too and now I don't get them at all. Mine were sudden and severe, but of very short duration - less than 30 seconds. They occurred only when I stood up suddenly and would literally stop me in my tracks.

I get pretty much daily headache, mostly minor.
However, if under stress they are usually more intense
Eileen

Congratulations on bringing down your platelets!

Headache and fatigue are the two most reported symptoms of ET. I have a headache almost all the time.

Please be aware that treating our headaches gets a bit complicated. You can't just pop NSAIDs, because they interfere with aspirin's very important effect on our blood.

You may get some relief by using topicals with menthol or lidocaine -- sprays, ointment, patches -- on the back of your neck. Topicals work through the skin, and do not interfere with aspirin.

There will be times will more pain relief will be needed. So please ask your oncologist about what NSAID will be best for you.

And if you do take an NSAID, wait a couple of hours after taking either HU or aspirin.

Its a fairly new diagnosis. I take 500 mg of HU twice a day. It has lowered the count from 1100 to 700.
I also am anemic , and have to get blood and iron transfusions.

I can simply prick my finger sometimes and it bleeds a lot.
Im td i most likely have a hidden GI bleed and thats why my hemoglobin drops so quickly.

Oh this headache problem im having is bad. Good to know someone else has it too

I take 500 mg 2 times a day . My platelet count was 1100, its now down to the 700s

I get really bad headaches. Is this a side effect

Does anyone get severe headaches? Im trying to decide if i should see a neurologist or just chalk it up to this disorder

You take a low-dose aspirin that is coated to protect your stomach, right? Uncoated aspirin could certainly make you feel sick.

I worked in the college tutoring center until I retired. Students would come in sick and sit down to discuss papers right next to me. I used sanitizer, washed hands between "customers," printed copies of their paper instead of looking at their work on their laptops and touching their get my laptops. I was sick all the time and retired early, which affected my SS payments.

Last Christmas my husband did a musical program for the preschoolers at the library. He caught the sniffles. He gave it to me and I was sick for 6 weeks with a lingering cough.

I get mild nausea in the evening if I don't drink enough water (64 oz minimum). Water takes care of it. So does eating smaller, more frequent meals thru out the day.

BUT, my hematologist ordered Compazine for nausea when she put me on HU. I only needed it once, but it does help! Call your doc's office and ask about this. My guess is that it will just take a phone call.

Thank you so much for this. I will talk with my doctor.