Platelets are too high: What can be done to find root cause?

Patty, when my platelet count rose slowly & steadily over several years I was very worried about the possible cause (inflammation? infection? ovarian cancer?). When it reached 400-500 about 6 months ago, genetic testing showed the JAK2 mutation. I believe that's present in many (maybe most?) ET cases & that (I think) was likely the cause. Started taking one 500 HU a day & the numbers are now in the normal range -- hoping they stay there.

Jean

I have been on this medication for over 3 years. Still in mid 600. I was taking one 2 a week and now up to 3. We will see if this has helped when I have blood work later this month.

Thanks for info

The meds will work but takes a while to get the dosage correct. My platelets were over 700. I started with seven days a week and after two months they dropped down to under 200. Went to 5X a week and now at 3X a week for a year and am steady just under 500 which is acceptable. I hope to stay on this low dose. Higher doses caused my teeth to hurt, swollen gums, extreme sensitivity to sun and hair loss. Good luck! I’m JAK2 positive and have Polycythemia Vera diagnosed Jan 2023.

I started out with 2 a day then when to 1 a day then 1 a day plus 2 3 days a week. We moved to Florida and had to change hematologist. She got be down to 1 a week and jumped to mid 600. Put me on 2 a week and when down to just above 400. Then in one month jumped back to mid 600. I am now on 3 a week. I go back for blood work on 2 weeks to see where I am.

Just praying that they are back in an acceptable level again.

The only side effect that I seem to have I tire out more easily and feel like I have some decreased strength but at my age this could also be attributed this this as well

You are absolutely correct on doctors taking time before they can figure out the problem with raised platelets. I have been seeing my GP since March this year. Several test done. Today he rang me in and told me CARL Exon 9 Mutation and JAk2 V617F Mutation have been detected in my blood sample. He said i have ET but she needs me to do a bone marrow biopsy before he can put me on medication. My platelets have been rising since 2021 and today reading was 848. She asked me to return in 3 weeks time for the bone marrow procedure. In the meantime she put me on 100mg aspirin.

I have had 2 bone marrow biopsy in the last 2 years nothing showed up

I have been on meds for 12 years. My only risk factor for heart attack/stroke is that I am I over 65. I take 1 pill of hydrea every day and an extra on Monday Wednesday and Friday. My counts are still I over 700. I refuse to take anymore. I can function okay but not at the level I was used to and my hair is thinning.
I had a second opinion and the hematologist said that as long as the numbers were under 1 million and no additional risk factors that I should be okay. I guess every doc has their own way of interpreting the studies. My guide is - how do I feel. I refuse to sit on the couch all day and worry about it.

Yes, took from March to November to get my firm diagnosis. Later, when the CALR test was available, I had that to confirm my driver mutation.

I am 70 and have got to the point where I am rethinking how far I want to go with treatment for my various ailments. I have way more anxiety about how much it's all going to cost to keep me going (way more than I have) than about what's going to do me in. I suspect this is the case for many of us elderly.

I also have the JAK2 mutation as does my brother. My brother could not tolerate the side effects of hydroxyurea but I can. My brother is taking a different medication for the JAK2 mutation but not sure what it happens to be. My last blood draw revealed a 408 blood platelet count and my first platelet count last a year ago was 1 million.