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

I just went to my hematologist today. My platelets were 708 everything else was good & pretty much the same as usual. My white count was up a little but still within normal limits but she wasn't concerned due to me having a sinus infection & just started antibiotics last night. We decided to try 500 mg 1x per day & see how I do. If not good then will adjust as needed. Labs get ran again in 3 weeks to see how doing.

Cool. I’m taking daily (500mg 4 days) and 1000mg 3 days) and hopeful to get my platelets down and ideally adjust. Glad to hear that your body adapted I’m hopeful. I have ET and am 46. They have me on a higher dose because I also had a heart attack 2.5 years ago. We’ll see but it’s been ok so far.

Mine did but also my dose was lowered from daily to 5X a week and now just 3X a week. I’ve been on this dosage now since June 23. I’m a 57 year old female with no other health issues and was diagnosed with PV in Jan 2023 after my annual labs showed high platelets , hematocrit and red cells extremely high. The previous year I was normal!!

I’ve been taking since January 4th and I’m definitely noticing the past sun spots getting worse. I’m also having muscle fatigue a bit quicker than normal and the occasional headache. Hoping it stops soon. Do you know if your skin goes back to normal after your body gets used to it?

I had some hair loss for the first few months until they lowered the dosage. Also, my teeth and gums felt sore and sensitive all the time. My oncologist said to hang in there and let my body adjust and I did and so did my body thankfully. The lower dose stopped my hair loss and my gums are back to normal. I also noticed tiny brown spots. Went to the dermatologist and he did that chemo drugs intensify past sun damage causing brown spots to come to the surface and to go every year to get my skin checked. I’m taking it since Jan 23. Good luck 😊

I just started on Hydrea in Nov 2023. I am not clear on if changes I am experiencing are a result of ET, Hydrea or age. Changes I have observed include acne and fatigue. However, I was fatigued for years prior to being diagnosed with ET. My hair has also been thinning for years. I pray Hydrea does not further contribute to hair loss.

(Replying to questions about nail chipping and breaking and vertical ridges)

I think it is just part of the aging process, because it started doing that for me before my diagnosis. (But maybe I was already into ET, just not diagnosed, so it MAY be part of ET )

ForCDurbin: I am a 75 year old female and have been on HU for a year. I don't think there is a "magic number" for HU. I take 1000mg and alternate daily with 1500mg. I have had no side effects except fatigue, which is a problem, but better than the alternative of stroke or heart attack. I have no hair loss or other worrisome side effects. It was worth taking HU for me but everyone's body reacts differently to meds. Only you can determine if it's worth it for you.

I recall difficulty getting the dosage I take (5 mg twice daily weekdays, once weekends) in late 2019. I was going crazy with worry until I was able to actually get it (cash) through Canada. Further inquiry said that one of the anagrelide hydrochloride was primarily sourced from CHINA, which had problems of it's own, hence the shortage. Since I get 90 days supply for $20 co-pay, by the time I needed a refill it was back on the market. Maybe I was taking 10 mg capsule once a day for a bit. Thanks for the info on arrhythmia....that's something my sisters both suffer from tho not me! I didn't have a cardiologist when ET was first diagnosed, active late 40s so.....

It was FDA approved in 1997 as Agrylin....not generic Anagrelide until 2005 or so. It was new when my very high platelet count was noted, re-directing me to oncology hemotologist. He suggested the new drug, see if it worked, without even a bone marrow biopsy. It worked, and worked until he retired, a new doctor within my care providers started his Frankenstein work on me. Happy to have self-advocated for a switch after 3-4 horrible months with hydroxyurea. That was probably around 2010.