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

That was my pattern, too. Extreme fatigue, then improvement after I started HU. I think age can also slow us down. So can stress over having ET. If ET comes on in late middle age, there may be hormonal changes. It takes time to try different things and adjust to all these changes. I remember those menstruation and reproduction films they showed us in girls phys ed back in the 60s with the bunny rabbits and butterflies. Sometimes I feel I could use a film to about being an old lady!

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!

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.

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!

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

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 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.

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

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.