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

I don't know your weight, but it would make sense that you'd start with a minimal dose, then increase as needed.

In my case, it worked out to up to 1800 mg a day. I had side effects at 1500 a day, and we switched to Jakafi.

Good luck to you.

Yeah, my BP was lower at home too.

Then I took my BP machine with me and compared to their expensive, calibrated, accurate one. Low and behold, my cheapie Chinese internet bargain BP machine was reading 15% lower.

Hi arliberatarian,
I just got my new BP machine this afternoon. So far I haven’t seen any significant difference in my old and this new machine’s measurement, both normal. I will know more tomorrow when I use it more. I do not care for the talking feature of the new machine. The voice should be more pleasant.
Are you on med for hypertension? If so, which one? Obviously, I will take BP med if necessary.
Thanks for sharing .

I have been on 500mg/day for 3 weeks and have noticed no side effects at all. I am taking Biotin , 5000 mg/day to hopefully help with hair loss , and to strengthen skin and nail issues if they arise . I’m also on 1 aspirin/day . I had already started having mouth sores , a few severe headaches, and fatigue since this past summer , and now they are all gone. I have a lot more energy as before , I was too tired to even go out of the house . Also for dry skin, I found an amazing product , Dr .Teals bath and body Oil. I was like you ; very scared to take HU because I read on this blog so many people have had side effects , but our bodies are all different and this beats worrying about strokes . My Oncologist/Hematologist wants to lowers my platelets ( last blood draw 650) to 400. We are all here for you ! Stay strong .

My oncologist suggested probiotics after I developed some bowel distress after a few years on HU. Helped a lot! Many ET patients also begin to develop extreme sensitivity to fragrances and cosmetics. Nobody's sure why, though ET produces histamines that crank up allergic reactions. I've moved strictly to fragrance-free hypoallergenic skin, hair, and laundry products.

I've been on Hydrox for over a year. I had different doses depending on blood work. I was upset that I had this diease and pouted most of the day for sometime and would conger up side effects. To be honestly truthful I lost a little hair but once I got my attitude in check and realized how much worse things could be I don't notice any side effects...In fact if I didn't take the pill everyday I would forget I have the diease. That doesnt mean the side effects your feeling aren't real, just a different perspective.
Good luck

I wasn't aware that ET cranks up allergic reactions. That explains so much, lol. I'm super sensitive to ALOT of things including medication. I can't even take hydroxyurea because it caused me to break out in a rash that lasted 3 days before they decided to take me off of it. I take an antihistamine daily, lol.

Thats interesting. Since I started HU Ive been ultra sensitive to bug bites. I got stung by a bee and it took a week to resolve. When I gardened I used to not care about mosquito bites. Now I have to wear long sleeves or bug dope (more poison!) it totally ticks me off🤨

I take Claratin every day, ovcasionally Benadryl if itching is bad. Not happy about it, but it helps.

Hi. I have been on HU for 2 years since 2023. My biggest issue is dry skin and itching on my feet, hands, body, and eyes. I use eye lubricant (Refresh) and had to move up to Restasis for dry eye symptoms. I use both Refresh and Restasis several times per day. For itching, I take a daily Claritin pill per day. For my feet, I use Urea Cream and alternate with Vaseline and Cetaphil. I had some hair loss, but it leveled off and my hair looks fine. Overall, most people have no idea that I am dealing with ET/Jak2. I also take Biotin for skin and nails and Tumeric for inflammation response. Check with your doctor before taking any meds, vitamins, or herbals. I take no painkillers since I am taking the 2 baby aspirin per day, AM and PM. HU makes you thirsty so stay well hydrated with water. I also have low iron but am not anemic, so I take daily iron supplements per my doctor. It has helped with my energy level. In the beginning, I had some fatigue, but as my blood numbers got better, so did the fatigue. Eat healthy, avoid processed foods including sodas. I traded soda for green tea and it was an easy adjustment. I avoid red meat and eat a healthy heart diet, mostly Mediterranean. I do moderate exercise and some yoga. PT is a good option to help you with aches, pains, and flexibility. Wishing you the best!
Karla
P.S. Here I am with Hubby and 2 of our 5 grands this past Christmas. Living my best at 71!