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I've had ET w/JAK2 since 4/21/21. I've taken HU ever since. I had pallets as high as 1175 to as low as 400. I take HU 2x daily. I have had all the side effects at one time or another. Few that come and go are headaches, mouth sores, swelling of legs, nails thinning, hair thinning, tired, brain fog, dry mouth and a few others, but I've been able to handle it knowing that other people have it worse. My doctor told me that the platelet levels can go up and down even with just a stubbed toe. I really can't say enough about how important hydration!!!!!! is. I learned it the hard way. Important to listen to your body, when you're tired REST, when you have the energy GET 'EA DONE.
I realize I'll be on this journey the rest of my life and I'm going to make every moment count. Live in the moment.
Be as active as you can and don't forget to stretch.

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Replies to "I've had ET w/JAK2 since 4/21/21. I've taken HU ever since. I had pallets as high..."

@msmac3
Thanks for all your wonderful comments. A new hip was added to my body. Lots of hoops. No walking out the same day. With ET it was necessary to spend a night in the hospital. I was more concerned about what the surgery would do to my ET than the what I'd have to go through the surgery. I needed to go on Eliquis and off Baby Aspirin along with other changes. I was given the usual suspects for pain. I lasted 2 days, I stuck to my extra strength Tylenol. I also developed a "seroma" which caused extra pain. I even gave my hip a name, "Furiosa". She cried at night wanting to go home...:). I told her she was home, we spent a lot of painful sleepless nights and we still have a few. Long story short..my platelets were up down and all over the place along with my red and white cells numbers. I'm hoping the pain I've had for 3 years will be gone soon. I read someplace that Hydra causes leg issues and that's what I thought I had. Xray showed 2 bones spurs and bone on bone in right hip. I'm going into my post 9th week and each day gets better. I just watched Mel Robbins interview with Sanjay Gupta and his new book "It Doesn't Have to Hurt". It's amazing what he says and I believe a lot of it...Pain is in our brain. Now I'm going to see what I can do about the pain at night. I'll keep you posted. If you've read to the end of this comment, thank you. You all know how worried we can get with ET but my wonderful "village" doesn't always understand. Have a great week-end and may the force be with us.