Hello, yes I too had a similar experience with ET and high platelets. I was put on baby aspirin daily and then Hydroxyurea 500 mgs 3 x weekly. My platelets were in the 600's but are now in the normal range. Honestly I've had no side effects from the Hydroxyurea and am more afraid of not taking it. High platelets can cause strokes, blood clots and heart attacks. So that's your choice. Good luck!

I have been on Hydroxurea since 11/22. Started on 500 mg x 2 daily, but my platelets dropped too low. Now on 500 3 x week. Only side effect I have noted is fatigue at times. I just rest for a while and then keep on going. I think it affects everyone differently. I am more afraid of a stroke. Best wishes

Hi jackt00 - I also have the Jak2 mutation. I am 77 and have had the bone marrow biopsy that confirmed what the blood work had told us. I have been taking the hydroxyurea 500 mg since last October. After about 5-6 weeks, my mouth broke out with fever blisters 2-3...and canker sores in my mouth and down my throat - 3 of them. My oncologist took me off of the HU for 5 days and then I started back 4 days a week. I take it on Sunday, Tuesday, Thursday and Saturday. I have had no more problems and it is keeping my platelet count in the mid 500s. I take an 81 mg aspirin daily. The only other side effect I might have is being somewhat tired, but I am not sure it is the medication or just my age....some of us dose off easier now as we get older. I think most people take this medication without many side effects from what I see. You see and hear about problems, but most people don't sit down and write "I am taking hydroxyurea and feeling fine'. I think there are many more of us than meets the eye who are doing well on this drug. It is working well for me so far. Much better to have the platlets lower by taking Hydroxyurea and hopefully avoid blood clots and possibly strokes. Wishing you well with your adjustment to this medication.
Ginger

Hi Jackt00

My name is Jerry and in 1989 while in the army got a severe form of ITP while I was at AIT in Augusta Georgia. They know so much more today about that disease than back then. I went through the bone marrow biopsy which was not any fun. 20% chance to live red cross flew my family there on emergency. Anyways I finally responded to very high doses of prednisone
Went to Germany preparing for desert Storm I got the disease again this time even worse. The prednisone made me crazy I started having really bad hallucinations and was losing my mind. They did an emergency splenectomy on me when they finally got my platelets up high enough. Red cross again but I wanted to die. I still to this day suffer from mental illness. It's been a lonely road about this disease until I started finding these groups I've learned so much about the disease. I did a lot of research on prednisone and it does cause schizophrenic like episodes at very high doses. I developed a mental illness out of all of that and that's why I still have it but it started in there. Anyways I know I'm going on and on I just wanted to share my experience.