What are most common side effects when starting HU (Hydroxyurea)?

Extreme sensitivity to sun, small brown spots on skin, and random tooth pain and that sucks! Feels like nerve pain and your gums feel
Sore constantly. Yes, hair loss but that Les seems over time. Good luck!

The varying side effects are interesting to me. I have them all! I started on HU in March 2025 and my 500mg daily dose has reduced my platelets from 1200 to 370! I HAVE lost hair! Every day my hairbrush has the evidence and it’s way more than ever before! I too have shin bone aches at night, vivid dreams, and extreme fatigue by 2:00 in the afternoon and I’m taking HU at night before bed. Jabbing toe pain is now occasional, but was terrific before HU! I take Aspirin ever other day and bruise spots are showing up. I’m 73, female, have JAK2, TET 2 and ASXl1 mutations.I want to stay hopeful—it’s hard with hair thinning and symptoms that are upsetting! I get it—you’re not alone!

That is why I always ask for, and my doctor wants, even though he is very experienced, my BMB to be CT-guided. It means being out patient in the hospital for 2-3 hours, but he *always* gets the right spot for his blood and marrow samples! (5 times??? Geesh!).

Hey dunewalker,

I did the bone marrow biopsy last week at Mayo and went over results with Dr. yesterday. There were 2 mutations, JAK2 6% and ASXL1 8.6% . He said that the low values under 10% were not concerning. My diagnosis is still Essential Thrombocythemia. Now we know what I don't have so far !

The bone marrow biopsy was no big deal. I experienced this type of feeling when had a temporary sciatica episode in 1999 and this procedure gave me a 2 on 10 scale sciatica feeling. I made sure to notice it as a feeling rather than pain. It was a fluttering nerve disturbance and was fleeting.

04/03/25 Platelets were 540. Begin 500mg Hydroxyurea every other day.
04/22 platelets 440. After only 10 pills, the 100 point reduction was a surprise.

Of the 2 doctors I have seen for this I have decided to make the 40 minute drive to Mayo rather than staying with the doctor close to home. I am also 40 minutes drive to MD Anderson another stellar choice . The Mayo campus is tranquil and beautiful which enriches the experience of going there by way of the coastal highway A1A whereas MD Anderson is next to a busy freeway in an urban setting, so being there is part of the treatment experience that I considered , especially since my husband and dogs appreciate the enjoyable waiting period in the shade or in an outdoor cafe.

Since patients come to Mayo from all over the world for treatment, I am very lucky to be able to make that choice . The patient experience is very important to Mayo and they make every accommodation beginning with patient drop off areas and valet parking to hotels and restaurants on the their campus. All medical and lab services are readily available including virtual follow up doctor visits if anyone is curious about how to manage long distance treatment at Mayo Jacksonville.

Thanks for rooting for me.

janemc, You made me laugh out loud. Thank you for that!

Your sisters sound like most of my family and friends. I know they love me, but they don't ask about ET. I think they see that I look and act normally, don't seem to be in pain, so they assume it went away. I was having coffee with a friend and she noticed that I had been to the lab to get my blood test. "I hope that blood thing isn't back," she said. I don't bother to disabuse them. They clearly don't wanna think about it.

I loved your response! Maybe the sister would get the hint then but probably not 🤣🤣

Shame on your sisters, lynnevb! Not asking how you are, not informing themselves about what you're going through -- they are really letting you down.

It's possible they find it painful to acknowledge that a loved one is suffering. Still, that would be putting themselves first, and you last.

They don't deserve to have such a forgiving sister. Please choose really tacky birthday gifts for them.

With two drivers, you are special indeed, cathy8.

When we're physically exhausted, how can we be anything but depressed?

Hoping the new drug regimen will help you get that platelet count, so you can start to feel much better.

Please take great care of yourself. When you are tired -- rest, don't push yourself.

As for "friends" who aren't supportive -- life is too short for friends like that.

Thanks to everyone on this forum , I was diagnosed with two mutations middle last year, jak2 and Calr, apparently to have both is complicating treatment. Was on Hydrea for month no change then JAKAVI for 6 weeks no change back on increased Hydrea and injection Aranesp increased dosage with both. No hair loss but the tiredness and weakness when doing anything is tough and tho I never suffered with depression I am having to fight that also. Agree with the conception from friends that they think it's not serious as doesn't conform with other cancers. It is great to hear other views and the positive vibes...