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

Baby aspirin (81mg) should be taken prophylactically every day if you’re over 60 even if you’re in good health. That’s a no-brainer. As I’ve said in previous posts, the secret to controlling your ET is finding the right hematologist, periodic blood testing and paying attention to any body changes. I’m 87 years old and quite active for my age. I had successful bypass surgery in April of 2024 and the ET diagnosis showed up after surgery. I’m convinced that I acquired the JAK-2 gene mutation which led to the ET diagnosis through blood transfusions I received during the surgical event. So far I’ve not heard from anyone on this blog if the same diagnosis occurred after they’ve received blood transfusions.

I have been taking HU 500 mg daily for a month, and platelets went down from 800,000's to 5oo,oo's, which is good. My problem is extreme fatigue. I have always been very active, and now I get to half way through the day and I'm exhausted. I don't know if that's from the ET or the HU.

Congratulations on your success!

We are all different, but for many of us, once HU tamps down ET's manic overproduction of platelets, we gradually get our energy back.

Hope you will experience that too!

My reading seems to indicate that this mutation takes a long time to develop into enough stem cells to generate enough blood cells to cause problems. We've likely had our mutations for decades before we ever see an adverse effects.

In my case, my RBC was trending up for years before it crossed the threshold to go see a specialist.

My reading seems to indicate that this mutation takes a long time to develop into enough stem cells to generate enough blood cells to cause problems. We've likely had our mutations for decades before we ever see an adverse effects.

In my case, my RBC was trending up for years before it crossed the threshold to go see a specialist.

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!

There may be some truth in your comments that humans have anomalies lurking in our bodies that take decades to emerge. That being said, these anomalies create havoc due to some event that triggers them. Medical science is very good at fixing the “now”, but miss the mark on the “how”. All so called random occurrences have a trigger. We just don’t know all the answers.

Yes! Research tends toward profit (medicines for the "now") and not on restricting the "how."

I think all of us have suspicions about how we developed ET. The problem is that ET develops long after exposure to suspected carcinogens, and trying to find commonalities among patients is really hard. And if it turns out that fossil fuels, household chemicals, pesticides, chemical fertilizers, food additives or whatever causes cancer, that means potential regulation of business and industry, which many people oppose.

I was diagnosed with ET in November and was on 500 mg HU twice a day, 7 days a week. My platelets initially were at 692 and are now at 172! My dosage has dropped to 500 mg twice a day, 4 days a week and we shall see how I'm doing at my blood draw next Tuesday. Finding the right dosage is trial and error. I have experienced no noticeable side effects. I'm 69 years old and considered high risk due to my age. I'd recommend not worrying about the side effects as, obviously from the comments, we all react differently.