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@gmacookie

This is in response to @eddb I have been taking this medication since 2014. I have had no side effects. Please take the meds but continue to a find a good hemotologist/ oncologist. They put me on a daily baby asprin daily. This is to help with the potential clots. I don't know if you will have any side effects or not but you need to try it so you know. There are other drugs they can use as well. Good luck...

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Replies to "This is in response to @eddb I have been taking this medication since 2014. I have..."

Yes, sick stomach from Hydrea, massive hair loss after 2 years of taking the stuff, initially on alternate days, then due to nausea & total lack of energy from them, I informed my Haematologist re this. He reduced them to 3 tabs per week + venesection if Hct was elevated over 45. My Hct has been within the normal range or just borderline, so no venesection since January last. He did give me the option of venesection only, or a combination of it & hydrea or to try a new tablet. I think I should have gone with venesection only.
My platelets & Hct were within normal range last appointment 2 weeks ago.
Was off hydrea back last March, developed sick stomach from med I was prescribed for a badly bruised muscle on my side. Had to sleep in a sitting position, due to pain. I was able to stomach the Warfarin tabs as are very tiny. Reason why I am on warfarin is prior to my PV diagnosis, approx 9 mths, I developed clot in my leg. Was put on warfarin for 6 mths. Had another review after that, was taken off warfarin, approx 4 months later developed lung clot, blood test sent for PV check, result..PV diagnosed with a Jak2 mutation.

While I took myself off Hydrea for approx 2 months! I felt I wasn't exactly reckless by doing so when I was already on warfarin blood thinners.

I had just gone back on Hydrea for about 3 days when my Haematology appointment was due. Lo & behold my Hct & Platelets were well within the normal range, Dr (not the Consultant) decided I didn't need any prescription for Hydrea, let me off home without a fresh prescription told me no need to take them. How relieved I was! She arranged a further appointment for 4 weeks later, attended that, readings still within the normal range, so again, no prescription needed.! Next appointment was 4 weeks later, platelets had crept up a bit so back on the Hydrea × 3 per week.
I must mention that my hair ceased to fall out was beginning to grow back reasonably well when I was off the Hydrea for almost 3 months!!
I did ask Haematologist if any need to be on Warfarin & Hydrea concurrently, to keep my blood from clotting.
He hesitated, didn't give me a conclusive answer!!

Apologies if I have confused any of you by by the way I have printed this but, had already printed it it but text flew off the screen.
Mags 17