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@jodyjazz
Can I ask you what UR is? I have been shedding hair recently.
I was diagnosed in 2022 and have been taking HU 500 mg at different intervals…first every day, then every other day, and finally four days a week. My platelets are staying right around 500 and my hematologist is okay with it,
Best wishes, Eileen
Replies to "@jodyjazz Can I ask you what UR is? I have been shedding hair recently. I was..."
Eileen,
Your case sounds similar to mine. I was diagnosed in 2023, ET/Jak2, and take HU 500, 4x week. I also need daily iron. My platelets were at 800K, but now in the 500s, and my doc is okay with that since the rest of the blood work looks good again. I have a new glitch. My recent bone density test showed a big change since being on HU for 3 years--and 4x a week is a low dose. I can't take oral bone meds, and now they are considering Prolia. I'm not happy reading about the side effects related to additional bone issues that can be caused by Prolia. Have you been checked for your bone density? I have been in osteopenia for 30 years, but it was stable with exercise, weights, calcium supplements, and diet. It jumped in the last 3 years, and now I have a 35% chance of a major fracture in the next couple of years. At 72, I feel fine, walk, take calcium and enjoy family, friends, and hobbies. Treatments lead to more issues. It's a bit frustrating.
Karla
ET/Jak 2
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@eileen11108
Eileen--- UR typo meant HU...........:-). Sorry
I think my hematologist is rather aggressive. I started on HU 1/1/23 and at that time mine were 576, but now with e-o-day dosing of 500 mg creeped up from 415 to 441, well shall see what May shows. Best to you..................Jody