Hi,

I was diagnosed with ET with JAK2 mutation in April. This Forum is really helpful and has been very reassuring to read.

I have an appointment on Monday and a few questions that I'm not sure whether to bring up or not so thought I'd try asking them here.

In March I had no symptoms of ET but was self-isolating with my partner who had Covid19 symptoms - I didn't have cough or temperature, as he had, but suddenly one evening temporarily went blind in one eye - whioch eventually led to the ET diagnosis. Since then I have been put on 500mg Hydroxycarbamide for 5 days a week and last time they wre measured my platelets were down from 1300 to 550. However, from having no symptoms I now have very severe headaches, am really sweaty all the time, have muscle aches, small red blood spots appearing on my skin and tiredness. If anything, these seem to be getting worse. It seems  as though, despite my platelet count being down, the treatmenis is causing all the noted ET symtpons, which I never had before.

I wondered if anyone else had experienced this when starting Hydroxycarbamide, whether things improve at any point and whether I should mention at my appointment on Monday if my platelet count remains down.

Take care and thank you for all the usefiul information already posted here.