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

Hello, I was diagnosed with PV in Jan 23. I just turned 57. Same situation with the blood counts. Platelets bounced around, on, off, seven days on hydra, then off, then five days and now on three days a week which I’m ok with. Counts seem to be good for over three months now. I had some hair loss and brown spots on my skin and even small sores and sensitive gums in the beginning but my oncologist told me to wait it out and I did. Happy to report that my brush appears to have stopped filling with hair every time, my mouth is back to normal and the spots are less. Saw the dermatologist and he said Hydroxyurea will bring up “old” sun damage from years past and to come once a year and he can burn off anything suspicious. Ok, we go on with life and just stay on top of our labs. If we think about it constantly, we will not enjoy everyday life 😊

I am 75 years old and have ET. I take 2(500) hydroxyurea every other day and 3 (500) on opposite days along with a full dose (325 mg) of aspirin every day. My last platelet count was 500. I have few side effects along with the expected fatigue. Certainly a lot better than the alternatives of risking stroke or death.

I've been on low dose hydrea for three years now. As long as I hydrate properly and take the med on a full stomach and do not drink alchohol, I do not have any adverse reactions. My hematologist has another patient on the same oral med for the last 20 years without major side effects. Oral hydrea is NOTHING like the intravenous chemo prescribed for things like breast/bladder/prostate cancers.

I was diagnosed with ET in 2020 and my hematologist put me on 500mg of HU. 1 capsule day one and 2 on day 2 and continuing with this pattern. My platelet counts are in the 400 range. I do take 80mg of aspirin as well as a few supplements because of gut issues related to the HU. I take 2 enzyme capsules and 1 probiotic capsule every day as well as Vitamin D for energy. I've had covid twice, even with the vaccine. Some small hair loss at first but it seems to have plateaued. I've developed Geographic Tongue which is annoying but not a problem. The HU did increase my tinnitus. But overall I can't tell if what I'm feeling is related to the HU or the ET., So, I stay very physically active and push myself to stay busy. I must say there are down times a few days a week where the fatigue does come....but I do rest and pace myself....then get up again and continue on!

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!

Hola, si te sirve mi experiencia tengo 40 años y tomo hidrea desde los 32.
El valor de mis plaquetas a mejorado y el efecto secundario que tengo es el cansancio.
Aparte de eso, voy bien.
También tenía muchos miedos al comenzar.

I recently began daily 500 mg HU for ET. Platelet count is 1 million.
My doc said it’s a “low dose” and side effects minimal with low dose.
I have long COVID and have longstanding side effects - nothing new that I’ve noticed.

A listed possible drug side effect of HU is SOB and I thought How Rude!
I looked it up and it means Short of Breath!!
Be careful what you read…

I have been on Hydroxyurea for 5.5 years with virtually no side effects (other than my hair has become curlier!). I started at 500 mg a day and now only taking this three times a week and my platelets are in the normal range. Within three months of being diagnosed with ET I was also diagnosed with CLL and breast cancer. An overwhelming time to say the least, but things are all stable for now. Skin cancer is also an issue for me, and we know the risk is increased by both the medication and having CLL. But I am active - so far, so good!

I’ve been on 1500 mg of hydrea daily for over 3 decades with minimal side effects and a stable platelet count for ET. Diagnosed when I was 20 and I just turned 56! I’m active and overall fairly healthy (except have strep throat now). I tend to pick up everything with this poor immune system… Anyway My doctor wants to switch me to interferon as he says hydrea for that long is not good. However my insurance doesn’t cover much of it. Monthly amount out of pocket is $2500, who can afford that. I’m not sure what to do. Looking for any suggestions. Thanks!!!

Welcome to Connect, @lambo1 You sure jumped in with both feet having all this medical excitement in a short amount of time. I’m happy to see everything is stable now and you’re doing so well.

Thank you for sharing your positive experience with Hydroxurea. Stories like yours can be so reassuring for anyone just starting hydroxy and feeling uncertain about what they’re facing with their new blood cancer diagnosis and having to start a treatment.

Do you take any medication for your CLL?