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

Thank for your response, it was very helpful. I did not take the 1000 told the NP that I would wait until I saw the Dr since I had only seen her once because she went out on maternity leave. So, I am continuing to take the 500 mg and will go back the end of this month for a retake . If my platelets are still high and after seeing the Dr. in March I will find another Dr. I think receiving a second opinion is necessary. I don't feel that giving me the medicine take blood work and then seeing me ever three months satisfies knowing my future. Will keep you posted.

Hi williamsjen,
I understand your concern about the dosing of Hydrea. At least you started low and saw a good effect. I met my O/H once only and she said she was starting me on a “low dose”; however , when I looked that up I saw Hydrea 500mg twice daily is not low does for someone like myself who weighs 108 pounds! I do not want the side effects of Hydrea either! I work also and have an active life I want to keep enjoying.
I really want to know is what is causing my recently diagnosed, for only one month, elevated platelets. I went in to have my very enlarged right ring finger proximal interphalangeal joint re-evaluated by this new insurance I have as it is very enlarged with no pain. Other group did not know the cause or what it was. Other doctors have not been concerned and just say it is arthritis. I have a nonpainful enlarged right sternoclavicular joint also just thought to be arthritis also. Now I am learning that arthritis can cause high platelets and I think that should at least be addressed and assessed as a possible cause for my high platelets before diagnosing that I have Essential Thombocythemia.
I am blessed to have no pain from my enlarged joints and no symptoms from my high platelets. I just want some answers and possible solutions.
Thank you for listening and I hope you get a new doc soon. I think I need some more different opinions on my case also. Also, I have no JAG2 mutation and hope they did check me for MPL and CALR mutations but I am not sure they did and I have no results given for those.
Have a blessed positive day.

Is your doctor doing blood studies about iron? I had similar numbers to yours although I take HU 4x week. I also take iron supplements 1x day which improved my energy level. I have low iron but not anemic. The fatigue got better for me after being on HU for a year. My doctor does incremental dosing and started low and worked up to 4x week with HU. I also drink a lot of water as the HU makes me very thirsty. Hydration is good for the energy too. Take care!
Karla

Getting the dosage right takes time.

In the old days, they'd give you 1000 or 1500 mg per day, and you'd have bone pain bad enough to send you to the ER. Now they give you 500 mg to start, but dosages often have to be adjusted up.

In my case, getting the dose right took a year. I started HU 500 mg the same month my mom died, and they were adjusting the dose the year I had to close her estate and clean out her house. I noticed no fatigue. I actually felt better on the HU. But our bodies and attitudes are all diff.

If you are nervous or think you will be too tired, call the office and ask if you could add an extra dose two or three times a week for the next month.

ET progresses slowly and responds to treatment slowly, and that can up the anxiety especially if you want things resolved quickly. And who doesn't?

Thanks for the information been taking 500mg daily platelets dropping from 1036 to 796 took another test today 20 days later and only dropped to 732 they now want me to take 1000mg and be tested in another month. I really don't want to take that high dosage. How tired will I be ? I normally wait until 8pm to take my bill to not feel tired
I work daily just frustrated I thought they would at least decrease more by now. Also frustrated working with NP as I only met Dr first and she been on leave for her baby being born
Thinking about going to another dr.

You are absolutely correct. I worked for a Fortune 500 company for all of my working career (38 years), and one of the carcinogens used in some of our manufacturing processes was a chemical used to clean electronic circuit boards (Trichloroethylene or TCE). That same chemical is used in the dry cleaning industry and was recently banned from use. Due to nature of my job I was constantly exposed to this chemical. My diagnosis of ET was discovered 30 years after I retired, and only after triple bypass surgery in 2024. I’m approaching my 88th birthday and the HU dosage I’m taking is doing it’s job without any significant side effects so, I’m grateful for that.

Yes! Research tends toward profit (medicines for the "now") and not on restricting the "how."

I think all of us have suspicions about how we developed ET. The problem is that ET develops long after exposure to suspected carcinogens, and trying to find commonalities among patients is really hard. And if it turns out that fossil fuels, household chemicals, pesticides, chemical fertilizers, food additives or whatever causes cancer, that means potential regulation of business and industry, which many people oppose.

Hi midterp76,
You summed up Everything so well. I have all of the same symptoms and have done all of the things you mentioned above except for the restasis (but I will ask my eye specialist if that is right for me). Interesting that we have both found the same solutions to our problems. And, no others do not realize all of our challenges. I see that as a good thing, mostly. I feel lucky that my friends and family do not worry about me. But I also wish I was better at making them understand that I have to take a lot of precautions and need a lot of rest. I am 70 yo with ET (triple negative for the past 22 years. I feel lucky that I am doing well. Thank you for posting, I am glad you are here.

My hematologist told me it takes about 10 yrs. before any thing starts showing. This means that mine started when I was in my mid 30s. I started noticing symptoms about 45 but chaulked them up to menopause starting. I got my official diagnosis when I was 47 but I hadn't had any labs drawn for several years so who knows when my levels actually started rising. I'm 48 now & they seem steady in the 600 -700 range without any medication help besides baby Aspirin.

There may be some truth in your comments that humans have anomalies lurking in our bodies that take decades to emerge. That being said, these anomalies create havoc due to some event that triggers them. Medical science is very good at fixing the “now”, but miss the mark on the “how”. All so called random occurrences have a trigger. We just don’t know all the answers.