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

Hi Lori:
My oncologist is happy with my results. My hemoglobin is 11 went up my white count is now down to 6 and my platelets 98. I was concerned about my platelets coming down however she said she isn’t. She also said all my other blood work is good. She seems surprised. I asked if I could lower the dosage but she said no keep It the same. I am afraid my white count now will go too low. lol. Anyway I go again for another blood test 2 weeks. She is keeping a close watch on me.

thank you kindly for the information. That is helpful

There are also anagrelide, Pegasys, and Jakafi. Anagrelide has been around a long time, but causes heart issues for some. Peg and Jakafi are newer, it generically available, and stilloff-label for ET, so really expensive and not always covered by insurance. Peg is interferon based and MAY sometimes lead to remission, but has more side effects than HU. Jakafi inhibits the gene that causes ET, but has not turned out to he the godsend everyone thought. Other similar drugs are being tinkered with, and something may come of those. I think it's now mostly used when HU fails.

Hang in there! Most patients start off with a higher dose that’s needed and they quickly adjust to what is right for you. I have PV and when taking it daily I had some issues. After about six months I’m down to 3X a week and am doing well. It takes time for your body to adjust. My platelets have been just under 500 now for a year and my doctor is fine with that. Give it some time and usually most do very well on this medication. It does its job for sure.

I am 72, have ET with JAK2, and been on Droxia for 10 years. My dosage has been increased recently to 800mg per day while my platelet count remains in the low 600s. As the Droxia increases, the anxiety does as well. The idea of chemo pills being in my system for 10 years is frightening. I have been frantically trying to find alternatives including diet; supplements; integrative medicine; etc. Yesterday my Hematologist/Oncologist mentioned two other drugs, both with bad side effects. Just when I felt I was out of hope and resources, I read your post this a.m. and feel so much better. I continue to find this site encouraging and appreciate all the comments by Lori. Thank you all for keeping the faith and sharing your experiences. It helps so much.....

Are you able to take a low dose aspirin a day?

I have been on Hydroxyurea 500 daily for one month, following month went to 5 days a week and now am on 3 days a week. It has moved from 890 platelets at the start of this year and it is now 386 as of last week. But with this reduction on platelets, it has also lowered my hemoglobin, white blood cells as well as red blood cells and my fingernails have become blackish, darker, hence the reason for reducing the dosage as shown here above.

I was diagnosed yesterday. I picked up the prescription for the dreaded Hydroxyurea 500 and was hesitant to take it. I do not want the clots and
I don’t want to wait. I have read on another blog that the side effect vary
from person to person. If I don’t try it I think I will regret it. This is the
only medication for ET for now. I took my first dose today and I’m still here.
Fear is a force that keeps you from making a move. Best wishes.

I was on hydroxyurea (Hydrea) for 7 years for Essential Thrombocythemia (aka way too many platelets) prior to my stem cell transplant 5 months ago. I felt totally normal on my daily maintenance dose and lived my life normally for those years while on the medication.
Hope you continue to do well. Lynn

Thank you for such a great article. You are right. I am tolerating hydroxy and have more energy than I have had in a long time. I also had to get off my Symbicort inhaler that my pulmonologist put me on when I was hospitalized last December for pneumonia. He agreed with my oncologist that I should come off of it. I ended up having anxiety the first week of my vacation and found out it was a side effect coming off Symbicort. Happy that is done and my breathing is fine. I mean I get out of breath at times but I am 76.
I will let you know my results today. There were a lot of sick looking people in the Oncology ward this morning. I said a prayer for all of us. I am blessed so far. Talk to you soon Lori. Thanks again.