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

Hi,
I think the dosage is supposed to be based on weight, but the pill comes in units of 500. I calculated that mine dose should be 750 total per day based on weight, but I was told to take two pills of 500 which honestly I gave not even started. I have not even met my primary doctor and was routed to hemotologist/oncologist after lab work. She said she was starting me on a very low dose which seems to not be quite true. I saw her eight days ago. First she wanted me to take the Hydrea I just described with baby aspirin but yesterday she sent a strange email telling me not to take the aspirin. Honestly, this whole ET diagnosis is just very confusing. I was perfectly fine other than have had a basal cell carcinomas removed and I have two non painful enlarged joints for which no doctors have been able to diagnose cause. I am blessed I am pain free and really just have the high risk as I am over 60 years old. Age alone seems like a strange way to develop treatment plan I my humble opinion.
Thanks for listening and have a blessed weekend.

Please let me know how you go. Good luck

Hello @ksyren, yes, it is really nice to be able to chat with people who are in the same boat.
Where would we be without Dr Google? Mayo Clinic is a wealth of information. Sometimes too much information is just a worry. My hematologist mentioned myelofibrosis at my last visit, he was still waiting for bone marrow test results. So, I google, myelofibrosis, wish I hadn't now. A bit worried about what will come next. Why would you say something like that if you still hadn't had all the results? Oh well will find out tomorrow when I see him. My GP is great.

I wasn't told either - just that it was "medicine" - but since I had not been told it was a blood cancer, no surprise. I also did my own research online (Mayo and Cleveland Clinic) and found out what I had was a blood cancer, why I was called a high risk and what "medicine" I would be given. When the box arrive, it was labeled "HAZMAT - ground transportation only!" If I hadn't researched, I probably would have fainted! Fortunately, I am now with a very transparent doctor, very collaborative so far. Everyone's comments are SO helpful. Nice to have a place where everyone "gets it!"

Yes, hydroxyurea (HU) is a chemo drug -- nobody likes the sound of that. I'm so sorry you didn't get a better explanation from your GP.

HU has been used for decades to treat not just ET and other MPNs, but also for sickle cell anemia. It helps lots of people every day.

And now it is helping you too.

Yea for some reason they never tell you that? I found out also by reading about it after prescribed. Sucks I’ll be on it for life with having PV. I’m two years in this month and it’s under control but I hate the meds! Jakafi is super Expensive and the only other choice for PV patients. It also can cause organ damage, but they monitor with labs. I’m glad you tolerated it well but sad that you developed something else now from the meds. Blood illnesses suck!

I would recommend anyone on hydroxyurea to look into Besremi. It has been shown to significantly reduce the risk of myelofibrosis, which can occur in 20-30 percent of people with MPN's like PV or ET 10-12 years after diagnosis.
You can go online and read about the benefits of taking Besremi at besremi.com. There is a phone number on the website to call PharmaEssentia to apply for financial assistance to pay for Besremi. PharmaEssentia can help coordinate the pre-authorization process with your insurance provider.
I am taking hydroxyurea and asked my doctor to consider putting me on Besremi because with my severity of PV I have a higher risk of blood clots and myelofibrosis. I hope to hear from PharmaEssentia this week.