Hello, first I’m sorry if they are mistakes in the text since my first language is french.
I was diagnosed with a high platelets number aroun 2004. At that time, the doctor tought that it could be inflammatory problems or pills leading to this. My platelets went up very slowly from 400 000 to more then a million. Later, it went from hyper platelets to ET. Around 700 000, my hematologist puted me on aspirin. Around 2009 he took a piece of bone narrow for a Jak 2 test wich came back negative from the lab. Years later, the simple blood test came and I tested positive to the mutation on that blood test. After some reserch, I found out that around 2002, I started having skin itching like hell when coming out from a bath or shower, or doind sports while having transpiration. A study came years later saying that patients with ET or myelo decease were about 30% to have this problem.
2 years ago around Christmas I starded having headeachs all the time, so I started to panic. I asked my family md to have a blood test. I went from 750 000 to more then a million platelets count in 2 months. Had lots of tests done in neuro but all was good. Started pills for those headeachs and started Hydrea 500 once every 3 days. Then it went up and up and up like 112-112 then 121212 and 22222 so 2 per day everyday and 232 and now 3 a day to have platelets between 340 000 and 400 000, wish is what my hematologist is aming for.
Not long adter starting Hydrea, my skin rash coming from water or pursparation came to a stop.
It was really a nightmare all those years.
I am to looking the net to see if there a new research, but not much is going on.
I am 51 so found out around 2004 and starded Hydrea in 2016. It went up very very slowly.
Side effects of Hydrea on me is more or less fatigue. I go to the gym, sane there, a normal training take the energy as if I did a big one. But it is better to keep the shape.
If you have questions, don’t hesitate, I am new here from today. Hopes this helps.