How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

I take hydrea 500 mg four days per week only. Started out taking 1,000 mg 7 days a week – which lowered my white blood count below the lowest normal. Next week, I have another blood draw to see where platelets and white blood count stand after 2 months of lowering hydrea. I have no other symptoms tolerating hydrea.

Anyone have hair loss when taking Hyderabad for PV?

I have been on hydrea since 2016. I have tolerated it well on 500 mg per day. Then my counts started going up now I take it every day and 2 on Monday and Thursday with a baby asprin. They tried to give me anagrelide at the beginning but that caused really bad headaches for me. Has anyone tried that drug? It might be an alternative??? If you have problems with hydrea. I was really frustrated by the fact that no one knows what causes ET and that it is actually a rare blood cancer! I was never told that by any of the oncologists I have seen...

I have PV but was resistant to taking Hydrea because you are not suppose to touch it with your bare hands, so my hematologist scripted me Anagrelide. It almost killed me, 1 pill and I almost died! So over 1 year later I started taking Hydroxyurea 500 mg every other night. My plt count has come down from 2024 in Aug. to 1520 as of yesterday with no obvious side effects. Of all the research I've done and all the medical professionals I've asked have no answers as to what causes these rare blood disorders but it was suggested it might be radiation?!?

I don't know what is in the anagrelide but it seems to have major side effects.
I know the instruction say to be careful handling the Drea but I have always just used my fingers to put it in my mouth with no issues. I'm glad it's bringing your numbers down.
One day you're body is producing normal platelets then suddenly its over producing . No one seems to know why...

I have ET, CAL-R gene mutation but the added disadvantage of Acquired Von Willebrand Disease. My platelets were at 2,800. Severe. With aVWD I'm at risk of bleeding out if injured. After my bone marrow biopsy I bled for three days. So after 2 ER visits I finally had to have the site (which keep in mind is not large) sutured closed. Also had to have another small puncture sutured closed bc it would not stop bleeding. I am no longer allowed to take aspirin, ibuprofen, etc. Tylenol is ok. I have been taking 1500mg of Hydrea daily which dropped my platelets down under 1000 but also has dropped my wbc too low. We are readjusting my meds due to the drop in white blood cells. Two rare chronic cards but thankfully aVWD is actually acquired so I didn't pass it to my kids. If anyone hears of someone with ET and aVWD please send them my way. I'd love to know there's someone else out there. take care all

I take one capusle 500 mg hydrea MWF to keep WBC RBC and platlets in balance - 14 months now. No side effects that i recognize as of yet tolerating the med. Good to hear someone else is benefiting from hydrea. I've not heard touching the med being dangerous - interesting. Thanks for sharing and good luck way forward. Hang in there.......... 🙂

There seems to be a correlation with chromosome mutation(s) one of which is referred to as JAK2. (I think i'm saying that right). I'm 78 and started noticing lab work issues with WBC, RBC, platelets, and hemo,.......next think i know i'm seeing an oncologist - what a rodeo.

Yep I know the feeling... nteresting...I just had them take some blood for genetic testing so I guess I will find out when it comes back.

I also have arthritis and degenerative disc disease. Chronic pain from my neck down most days. I had never heard ET described as a rare blood cancer until recently either! Well good luck to all of you... keep us updated with anything new!