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@pattycz

I was diagnosed yesterday. I picked up the prescription for the dreaded Hydroxyurea 500 and was hesitant to take it. I do not want the clots and
I don’t want to wait. I have read on another blog that the side effect vary
from person to person. If I don’t try it I think I will regret it. This is the
only medication for ET for now. I took my first dose today and I’m still here.
Fear is a force that keeps you from making a move. Best wishes.

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Replies to "I was diagnosed yesterday. I picked up the prescription for the dreaded Hydroxyurea 500 and was..."

Hang in there! Most patients start off with a higher dose that’s needed and they quickly adjust to what is right for you. I have PV and when taking it daily I had some issues. After about six months I’m down to 3X a week and am doing well. It takes time for your body to adjust. My platelets have been just under 500 now for a year and my doctor is fine with that. Give it some time and usually most do very well on this medication. It does its job for sure.

There are also anagrelide, Pegasys, and Jakafi. Anagrelide has been around a long time, but causes heart issues for some. Peg and Jakafi are newer, it generically available, and stilloff-label for ET, so really expensive and not always covered by insurance. Peg is interferon based and MAY sometimes lead to remission, but has more side effects than HU. Jakafi inhibits the gene that causes ET, but has not turned out to he the godsend everyone thought. Other similar drugs are being tinkered with, and something may come of those. I think it's now mostly used when HU fails.

I have been on it for about three years now. Currently taking 500mg 4x week. It resulted in my not needing a phlebotomy for more than one year as it seems to be keeping my #’s pretty stable. This treatment is for PV and so far I have not experienced any side effects.