Essential Thrombocythemia: Making treatment decisions

Thank you.

Have you had any side effects from the HU? Thank you.

I too have ET and give myself injections of Besremi every two weeks. I cannot use Hydrea because I’m also taking xeljanz for another condition.
My doctor is a big proponent of this form of interferon. I have been on it for six months and it seems to be working, with few side effects.

Sounds great. I hope I have the same experience

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!

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!

What kind of side effects are you having? What instigated your doc having you do more than just baby aspirin? I'm newly diagnosted, 553 count; and take baby aspirin. Thanks for the info...take care.

Regarding bone pain, there are enough of us commenting on it that it seems to me unlikely to be unrelated to. I never had an issue with bone pain before this journey with ET JAK2+ began a just almost a year ago. Someone on this forum mentioned "painful toe jabs" - OMG, I have been there! None of my docs associated it with the ET - pain was excruciating (and I have a very high threshold of pain). I was sent to 4 different doctors and had a full battery of tests revealing no observable cause. I was taking extra strength Tylenol (all I can take) every 6 hours and it merely took the edge off. It stopped as quickly as it began. Have since experienced intermittent pain in both feet and in my hands as well. It was not the Hydrea, because it began before I started taking it.

Yes, I also had bone pain in toes before being diagnosed, although my platelets were rising over 3 years before I was diagnosed or began HU. I find Tylenol does nothing for the pain (and years ago Dr warned me not to take too much tylenol as it can affect liver)). I find advil works better.....before HU, I used to take a daily aspirin for the pain, which was best pain reliever for me

Unfortunately I cannot take aspirin, Advil, Ibuprofen, etc. as it aggravates my sleep apnea. So I'm stuck with Acetaminophen, even though it only took the edge off. The good news is it worked very quickly when I used the rapid release and made it possible for me to function.