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

@1pearl Hi Pearl
Since my PV was discovered when I had a stroke and two dvt’s I’ll be taking the hydroxy forever
along with Eliquis
I tried to have it changed to another drug, but my
onco says he doesn’t want to change what works🤷‍♀️
My best wishes to you

@1995victoria I just read your post, but I’m interested in if your fingernails have improved. I always had great nails, but terrible hair! My hair is very thin and very fine. My ears stick out if I wear it straight. My doctor put me on Hydrea 500 mg. twice daily. My nails are now brittle, and the skin under them is blackish to dark brown. I was so exhausted, I thought I had COVID again! My platelets fell to around 250 and my doctor wanted me to keep taking that much Hydrea. I begged for a lower dose as my platelets were still dropping. He prescribed 500 mg once a day. Fatigue improved, but my nails continue to grow darker. My hair is falling out, but maybe it would have anyway as I am 75. Who knows? That part is most annoying! I would like to paint my nails, but that hasn’t worked too well as the brittle tips keep braking, peeling, and my unsteady old hands make a mess of it though I keep trying! These are small matters though compared to a stroke or embolism! I hope you have continued to improve ! I am rooting for us all!

@lynns51 yes, my nails aren't what they used to be, but then again neither am I, almost 6 years older than you. Luckily I always had thick hair. Just before the pandemic I stopped coloring my hair, went front white with salt/pepper at back. My hair was dry and breaking from hair dye, much better now, but not as thick as when I was 30 (but neither am I)

@1995victoria I am 78 and have PV/JAK2. Like you, some things just aren’t what they used to be.
After starting 1000mg of HU daily, I noticed my hair, Which was always very thick and abundant, was thinning, especially at the temples. My nails, never very strong were splitting and breaking at the quick! Finally, someone here on Connect mentioned taking biotin and I asked my hematologist and she told me it was fine to take but to discontinue several days before a blood test.
Honestly, I didn’t notice a difference until after taking it (2 capsules a day) for over 2 months. My nails still break but not at the quick. And, the hair is slowly growing back at my temples.

That's good....my sister takes collagen......which she takes for her nails and hair....

I have been taking hydroxyurea for about 2 years now. Bone marrow biopsy showed Jak2 mutation. Dosage started at 500 mg, but not every day. A year ago, I ended up in ICU after clots in lungs. The doc went in through groin to suck out a LOT of large ones. I have been taking eliquis ever since. My platelet count did not start coming down until I started taking HU 1000 mg per day. Blood test yesterday. Count is 281.
I am not losing hair, but had to start taking famotidine because of nausea soon after I started taking HU. I try to avoid acidic and spicy foods. I THINK my arthritic knees have gotten much worse since on higher dose of HU. My hemotologist seemed surprised at that. Some fatigue, but had that before the diagnosis.

I had thinning hair which subsided and extreme photosensitivity. I could feel my skin burning through my clothes when outside in the sun. It’s not as bad but still an issue which upsets me but it’s better than having a stroke or heart attack so I take it. Tiny brown spots in my skin also which the dermatologist says the medication brings up orevious sun damage.

Hi, I take HU 500 4 days a week and 1000 3 days a week. This has bought my platelet count down from 1300 to 397. I'm feeling alot better, I take Hemp Oil and don't eat alot of carbs so this helps with inflammation. After reading the little information around, getting insights from Mayo Connect discussion groups, talking to my doctor who seems interested in ET and Jak2 mutation which I have, HU effects alot of our bodies in different ways and effects people in different ways. Recently learnt after an eye test that HU can effect peripheral vision by building up crystals in the eye and I should have another eye test in 6 months to see if the HU has effected my vision. So far for me the side effects of HU have effected they way I go about my day to day life, fatigue, diet changes exercise and more doctor visits but a feel this far out weighs having a heart attack or stroke. It is great to have Mayo Connect page where people share experiences etc an invaluable resource.

I also have tiredness and very dry scalp from the HD.

@sanlee7 Hi, I also have tiredness but the thing that bothers me the most is that my scalp always feels uncomfortable, hurting. I didn't relate that to the HD but maybe that is what is causing the issue. I've been taking HD Mon, Wed and Fri for 4 years and it definitely has helped keep my red and white blood cells and my blood platelets within range which is crucial so I'm pleased and don't ever consider changing the HD.
lmurphy832@aol.com