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

Thanks for sharing as this information is great to know. being on HU for 24 years and you are doing well. Happy New Years!

Jennifer

I took your advice and started taking hydrae between 7 pm and 8pm. I split my blood pressure 5mg to take after breakfast, my 80mg aspirin around 1pm and my hydrae around 7 or 8 2 hours before bed. I have slept much better do have weird dreams but, I can deal with that. sometime not all the time feel vague in afternoon I work from home so that works out well. sometimes I notice being forgetful but can come with me being 64 years old and holding down a job managing a lot of staff, so I don't worry just write more things down.

Thank for sharing your journey. I started HU early this year and you have given me renew hope since you took the med for 24 years. Best of luck with Anagrelide. Can I just ask what dosage were you taking your last year with HU?

I hope you wear a hat when you're outside now?
They may not be fashionable, but they will keep the sun off.

Is anyone on this list serve taking any of the new weight loss drugs along with HU? What has been your reaction?
Thanks. Linda (I have ET and take 500 mg HU per day.)

I was on HU for 24 years. Only side affect was fatigue and yes- thinning hair.
Then I developed a bad case of locally advanced skin cancer on my head. As you know, on HU, you are sensitive to the sun and should be diligent with sunscreen all year round. But who put sunscreen on their head? I didn’t.
I was able to control it with a topical cream that took 6 months to eradicate it but I scared me off of HU. Please all- use sunscreen.

I am now on Anagrelide. I had no previous heart issues so it works for me.
Yes, it initially gave me some heart palpitations but my body adjusted.
I also take nicotinimide which works to thicken my hair and has been shown to be helpful in keeping skin cancer at bay. I am 66.
Was diagnosed with ET at 39.

I've been on Hydroxyurea since 2021. I was 69 when diagnosed with high platelets - 800,000 in a routine blood test and a bone marrow biopsy confirmed ET. The hematologist put me on Hydroxy starting at 3 doses a day (500 mg/pill) then a blood test, then dropped to 3 one day, 2 the next, then a blood test, and after 6 weeks of testing I was finally stable under 400,000 platelets. Now I'm at 2 pills a day for the last 3 years. I had no real side effects, maybe a little fatigue. I am moderately active, walking almost daily and doing some other exercises once a week. I take the 2 pills with a glass of water before breakfast and that has not given me any stomach trouble. I stopped taking baby aspirin because my mother had stomach problems and I am more sensitive to some foods now. I put on gloves before handling the pill bottle and pills (disposable gloves are everywhere now thanks to Covid). I wear a hat and put on sunscreen anyway as the sun here in NM is intense and I'm fair-skinned.

I started out taking HU 1x week for a month, 2x week for 8 months, and this week, at the one-year mark of my ET/Jak2 diagnosis, I am taking it 3x week. I have fatigue and dry skin. If you are taking HU daily, maybe a slower intake might help. My platelets started at 780K a year ago at age 69. Mine have gotten down to 500K, but they recently jumped to 580K, so I am taking HU 3x week. I also take daily iron and baby aspirin. My general blood work related to RBC has also improved.
Take care,
Karla

Your 40s have been very rough on you. I hope that despite the ET you have that the years ahead will be much kinder on your body.

Cool. Thanks for the additional info @dkmitchell ……. and @cdurbin I also had a meniscus repair in my right knee when I was 23. I’m 46 now and my knee is certainly more painful after exercise since I’ve taken Hydrea. It hasn’t hurt in so long but now it’s like it needs to warm up a ton before exercise and just feels stiff and painful the day after. I’m told your body “gets used to it” and that stuff stops after a while but I don’t know.