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

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

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..

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.

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.

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.

What kinds of food did you remove? Thank you

All dark leafy greens, meats that are designated "loin." When you research "foods that increase platelet count," you'll be amazed what's listed.

Lots of things affect platelet counts in normal people: stress, food, medication, etc.

ET is a different animal. Your driver mutation is a glitch that tells your body to replicate a certain type of cell (or cells) like crazy. Your bone marrow produces megakaryocytes with abnormal nuclei--basically, big dumb platelet-making cells that don't work right.

It's not just the platelet levels that need to be addressed with ET, but that the platelets themselves may be "stickier" in people with certain ET mutations, which is why doctors put everybody on baby aspirin, even if they don't yet need to address the platelet levels.

Dietary changes can reduce overall stroke risks, especially if they are coupled with exercises that work circulation. Dietary changes can also help with fatigue and brain fog.

If you have credible evidence (double-blind research) that your dietary changes control ET, please post it.

Cognitive dysfunction is not a symptom of ET, so not sure why Lion's Mane mushrooms were suggested. Please post credible studies that show this is effective for anything besides making money off desperate people.

Here ya go @nohrt4me - see “edible fungi”:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8775512/

This study is geared toward those with cardiovascular disease, not blood cancers. These are completely different diseases.