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

Diet plays a huge part in keeping platelets within the Normal range 300-450. Once I identified what foods that increased platelet counts, and removed them from my diet, my count finally dropped to "normal" levels. And I noticed that for me, carbs increase my count too. For brain fog, I take Lion's Mane mushroom capsules once a day. Made a world of difference in my cognitive ability.

Hello, I am 1.5 years into taking it. My platelets were 950 as well and I did not have any ET symptoms. I take 500mg Hydroxyurea and low dose baby aspirin 1x day. I too was/am concerned about the side effects but like you more scared of super high platelet count.

I have gotten new symptoms and not sure if from the meds or ET(I am also JAK2 positive) but I do get very fatigued which lasts a day or 2 and some days a little brain fog but otherwise no other issues. My platelets are now in the 500's which my dr is happy with. I am very active at work, exercise and eat well which is really think helps.

3 yrs HU ET CALR. Instead of curly hair it accelerated my male hair loss, sensitivity to sun, fatigue and brain fog. I have the odd side effect of the sensation of swelling in my feet overnight, I am an active senior 5hrs minimum biking weekly and good sugar levels. My platelets have bounced. started with 500, peaked at 1500, have been over a million a couple times, RBC/WBC are slightly low. I have found that taking HU at bedtime has been most effective.

Hi, just joined. I have PV, diagnosed a couple months ago. Started with just phlebotomy. Now on Hydroxyurea 500mg and getting weekly blood tests to see if needing phlebotomy still. My hematocrit level is .10 from phlebotomy. Been on Hydroxyurea for 4 weeks. All new to me and confused. Hydroxyurea gives me nausea most of time and kinda feel worse than b4 started taking..

I have been taking HU for a year this month. Initially, taking it daily, my mouth broke out in sores...on my lips and on the inside of my mouth and down my throat. After staying off for 5 days, my amazing oncologist/hematologist started me back three times a week....then after 3 months, he increased it to 4 times a week for 3 months, then 4 one week and 5 one week alternating for the next 3 months. It worked beautifully with no sores, and my platelet count has been in the normal range for the last two times it was checked. I feel that my oncologist was very methodical and thoughtful working back up to where we are now. I also recognize that we all respond to HU in a different manner and some cases are not as simply solved as mine was. I am grateful.

Ginger

I've been on HU for 3 years, first year was biggest adjustment. But I'd rather take HU then get a stroke or heart attack.

When given the diagnosis of PV and receiving the news that I will be on Hydroxyurea I was also taken aback. After speaking with my sister-in-law who is a pharmacist I was ready set go to follow my doctors orders. The first pill I took really was noticeable but I also had a bit of the jitters. It has now been one year and taking this med has improved my life. As I continued the medicine after several months I very rarely notice a headache. I know we all have different body chemistries and reactions. Hydroxyurea was first approved by the US FDA in 1967 I feel comfortable with the knowledge that many lives have been improved and I look forward to ongoing research to find cures for all blood disorders. Every day is a blessing and trying to focus on the goodness in the world is my necessary part in feeling good.
Best to you,
Virginia

Yes, I was diagnosed with PV in 1/2020 but held off taking Hydroxyuria for 2.5 years until my PLT count was up to 2057! I started on 1 pill daily for a year and about 3 months ago started taking 10 pills a week. Now my PLT count is slightly over 700, whew! I was totally freaked out by what was said about this drug, you cannot even touch it with your bare hands but I've actually had no bad side effects and the fatigue I was experiencing has subsided. As to your fear of blood clots, find out about natural blood thinners, Ginkgo, Turmeric, Grape seed oil/pills, garlic, ginger, etc. But if holistic doesn't help, take the pill, it's better than sudden death.

Hello I had issues with hair thinning on Hydroxyurea. I think that possibly hair growing back in is courser and appears curly? Just a thought. I originally took 500mg daily and saw an immediate difference in my hair. Currently taking 3X a day and my hair issues have resolved. Hang in there guys, we got this!

My once straight hair has been getting noticeably curlier over the past two years though I didn't start HU until late April this year. I wonder if it's actually a side-effect of ET which was diagnosed after high platelets on annual labwork in December.