Hydroxy withdrawal

[stevenjust]

Hello all,

I have had ET for around 7 years and have been on Hydroxy since the start, my dose has been increased over the years to get my platelets under control, was at 560 at appt 6 weeks ago, I was on 2mg (4 tabs) daily plus aspirin. I always ask my Dr can I reduce the dose which he advises against but this time he said he was prepared to take me off Hydroxy as I’m low risk and he’s not concerned until my platelets hit the 1500 mark. My last appt yesterday my platelets had jumped to 1350, my consultant said he expected them to rise and still no concern and come back in six weeks. Whilst I’m happy to be off the Hydroxy, I am now on 6 weekly appts instead of 4 monthly as I was. Has anybody else been taken off suddenly like this. I’m 46 and in good health.

Thanks

Justin.x

[Kelly2]

Hi I was told that they don’t take you off Hydroxyurea immediately. This is done slowly.

[Ebot]

I thought it was slowly up and slowly down. Bit surprised that after seven years on a (I think quite substantial?) daily dose of Hydroxy your consultant has let you go ‘cold turkey’ and is now happy with your soaring platelet count. 🤔. Not sure I would be feeling entirely reassured by this. Did he perhaps think you were adamant that you wanted to quit the drug altogether? Maybe worth asking for another consultation and asking a lot of questions?

[Gesha in reply to Ebot]

You should try pegasys 45 mgr weekly! What mutation?