Concerned about medications for ET JAK2

I have ET, platelets over one-million. DR is putting me on Jakafii. Has anyone else been on this med? What were your side effects? Thanks,, Worried

Hi sorry to hear.I have taken hydroxyurea for about 6 months and had blood drops every week then two weeks and now every couple months.I am on blood thinners and 1000 hydroxyurea 5 days a week .It takes a few months for your body to adjust.Be patients and follow the Doc instruction. Your not along as we all go through this . Hope you have a good day.

I have been on Jakafi since Aug., 2022. I started at 10 mg/day but then my doctor increased it to 20 mg/day and I started having side effects. I had pain in my hamstring muscles and hips. I asked him to reduce the dosage and the pain went away.

I have PV and was put on 10mg then 30 mg Jakafi. Side-effects were constipation, scrubby toes and feeling of heavy weight around ankles or feeling of lead in my feet, but not to the point I cannot walk - it’s just frustrating. I ho back yo my oncologist next month…

Just new diagnosis of ET and just starting hydroxurea so we’ll see what happens. Don’t go back for bloodwork for 2 months

He only gave you 2 weeks to see a change? I don’t go back for my first bloodwork for 2 months after starting hydroxurea last week

Thanks and hope your feelings alittle better

I have been diagnosed with ET Jak 2 last June. I am 70 , vegetarian x 50 yr, active, run, walk, yoga daily. They suggested HU, I didn't want to take, My Hematologist said ok, just ASA for now. my ptl run between 500-600. Have been up due to covid infection. waiting 1 month for recheck. meanwhile , a Naturopathic Dr suggest I take lumbrokinase. Has anyone tried this med? Did It lower plts?

Interesting. I looked up lumbrokinase at NIH. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3876685/#:~:text=Lumbrokinase%20mechanism%20of%20action.,viscosity%2C%20and%20reducing%20platelet%20aggregation.

What is ASA? Also I’ve never heard of Lumbrokinase.