← Return to Essential Thrombocythemia: Making treatment decisions

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@mumblipeg

I'm new to all of this. I am taking 500 mg HU for 5 days and 1000 mg for two days of the week. I have a diagnosis of JAK2 ET with mutations ASXL1 and TET2. I started HU in April 2025 after a bone marrow biopsy. Before treatment, the high platelets (1200) were causing painful toe jabs and leg aches. I was taking at least 2 Ibuprophen alternating with 2 Naproxen every day to keep the pain down. At that time, my hair was noticeably falling out in the shower. I believe that the stress and the high dose NSAIDS were the culprits. I'm scared now that HU will cause additional hair loss, so I hold my breath and hope. After a month, my hair is not falling out like it was, now hoping it will thicken back up. My platelets are lowering and I can tolerate the HU. I seem to be off balance at times though, tired and brain fog. I take the capsule at night after a meal. I'm 73, female, active. I added a multi- vitamin and a Biotin capsule to my morning routine. I have had a total thyroidectomy, so taking Levothyroxine early in the morning, too. Anyone else taking Biotin? Or is that contraindicated? Just looking for HOPE and ideas to combat something I didn't see coming! THANKS!

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Replies to "I'm new to all of this. I am taking 500 mg HU for 5 days and..."

As your platelet count comes down, you should get some relief from the exhaustion and dizziness, which are symptoms of ET itself.

I believe others here have had good results with Biotin. Taking a multivitamin and staying active -- excellent!