Anyone else find the side effects of Hydrea 500MG frightening?

Good Luck to Everyone on this site. Here is a bit of my story for those who feel alone with their diagnosis.
I am 70 yo and was diagnosed with ET 21 years ago (triple negative). I have been on hydrea 1500mg 3 days a week and 1000 mg four days a week for the past 8 years or so. No side effects except for heartburn and if I take hydrea with a meal the heartburn is not as bad. Sometimes I need tums or pepcid or ginger if the heart burn gets worse.
When I was under age 60 I did not need to be on hydrea. Once I turned 60yo I was in a higher category for stroke so I was started on hydrea. I have been on baby aspirin daily for about 18 years. I have had 2 bone marrow biopsies in total. I am not sure if I have been lucky or I had skilled physicians but the biopsies were not that bad at all. I eat a whole foods diet and stay away from processed foods, keep my weight in the normal range and exercise regularly. I try to life the life I have and be grateful but I do acknowledge that someday I will die. I do have fears of ET transitioning to a worse diagnosis but I try not to dwell in this mindset as I am doing everything I know to be as healthy as I can. I leave in 10 days for a month in europe. My support socks are purchased and I am looking forward to some adventures. Wish me luck and I will check in with you when I return.

This is so encouraging for me. I have been diagnosed with CMML however they are going to treat me as if I have AML. I have started hydroxy 1000mg in the morning but will have to go up to 2000. I have been on it for a week now. I am going to
Ask if I can take the extra dose at night. My hematologist is also talking about a chemo injection 5 days a week. It was a board of doctors in a big hospital who met and have decided in this treatment. I am 76 yrs old. I originally diagnosed 8 yrs ago with low risk MDS. I read on google that the life span for someone with CMML is 20-30 months. Scary.
I meet with my oncologist Tuesday to discuss it all. I did accelerated chemo 17 yrs ago and radiation for breast cancer.
Apparently this blood cancer has nothing to do with the breast cancer.

I have skin only Langerhans cell histiocytosis (LCH), a rare blood disease, chronic myelomonocytic leukemia (CMML) (an MDS/MPN crossover), and immune thrombocytopenia (ITP). These three rare blood diseases may be related, but it is not known because of a lack of research in rare diseases.
Diagnosed with the painful skin lesions off LCH in 2016, I tried many topical treatments and brachytherapy (radiation) without relief.
After a CBC in 2019 showed a platelets count dangerously low at 2, a bone marrow biopsy showed a diagnosis of CMML. My team of hematologists, and a cutaneous oncologist, decided to try hydroxyurea, often used for LCH and forCMML. It has been a miracle for me. I have had occasional headaches that are gone by 10 or 11am and a weight gain of 8-9 lbs. This is a small price to pay for the relief to the painful skin lesions and stability of my blood counts!
This is a very old medication, from the 1960s, that is commonly used very long term for Sickle cell disease in young people and usually with minimal side effects. If it is beneficial for our chronic blood diseases, we can be grateful. I understand that a few people have side effects that may be serious, but it is generally well tolerated and certainly proven!

When I got the results from my annual Medicare checkup last year my platelet count was 900k. By the time I saw an oncologist a month later it was 1.2 million. They put me on hydrea right away. I haven’t noticed any obvious side effects except for itching, although I thought that was a symptom of ET and PV as I had it before I started the drug. I can’t comment on thinning hair and dry skin either. I’m 69, and I’ve had those issues years before I started taking Hydrea.
I’ve been in this forum since then and what I’ve learned is active people have the best outcomes. I’ve got several landscaping projects going and we’re building a cabin; also things that were going before this diagnosis. It all takes longer because I take a lot of breaks, but it seems to me at least part of it is that I’m 69 years old.

My platelet count bounced around a lot for about six months before we hit the right dose and now my platelets are now consistently in the 300k range. I tap the capsules into the cap of the bottle and then right into my weekly pill holder. And daily from there right into my mouth. I do take a sip of water before I take the pills, with more water, just to get them down quickly. I never have to touch them. I feel as good as I think I possibly could at this point in my life, which is pretty good! Although I think about my blood cancer every day when I take my pills I don’t dwell on it. I treat every day the same as I did before my diagnosis, a blessing.
Like you I was freaked out by the listed side effects. Although they sound horrible, they seem to be rare. I’m way more concerned about the blood clot than the side effects. You got this.

It actually is a guessing game lol Once your platelets stay where they like them, we can only hope they stay steady! Is that medication instead of Hydroxyurea? I hear that works well but can possibly have more serious side effects. Also, is it very expensive? I’m so grateful that Hydroxyurea is only $8 for 30 pills. Between the labs and phlebotomies, I reach my deductible pretty quickly and don’t have prescription coverage. I hope you do well and get good results, Good luck!

I am almost 72, with JAK2 diagnosed a year ago, no history of thrombosis. My hematologist/oncologist says to continue HU 500mg 3X weekly as long as my platelets (currently 587) stay below 600.

I'm glad you're experiencing minimal side effects. I no longer have the severe headaches that came with daily HU. Brain fog and lack of energy persist but that could be from ET itself or the stress of caring for a 97-year-old parent with advanced dementia.