How fast do you start to feel hydroxyurea symptoms?
Im 64 and have been diagnosed with ET since 2022. My platelets are now at 768,000. I Will be starting hydroxyurea 1 per every other day this coming Monday. I was wondering your experiences on how soon did you start to feel the onset of symptoms ? I’m so scared. I cried all the way home after picking up the prescription and then some.. not sure if I should have someone stay with me in the first week just in case I have a bad reaction.
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I am also 69 and started on HU two weeks ago. My platelets have gone from 700 to 650 and so far no after effects. I am on 1000 mg a day.
I wish you the best!
Essential amino acids stopped me from losing hair, and it’s been growing back really well. I started HU in February when diagnosed with ET, 1000 mg per day, and my hair was falling out in handfuls, especially when I combed it. Started amino acids in July for a different reason, but soon realized my hair was no longer falling out. The brand I use is Double Wood. Maybe it’ll work for you also. 65F
I had no side effects until I was up to 1,500mg a day. Hopefully at 500mg every other day you won't even notice it.
I did fine for 3 months then got a very itchy rash and ran a high fever.
Thank you so much for your reply & great your hair begun to grow back.
I consume foods listed under Essential Amnio Acids but may not be taking these foods in sufficient quantities.
I further read that mushroomcontain a high amount of these nutrients.
Apologies for layout of print, have to check my settings.
Good luck with the hair growth.
Hi, I have be on HU on and off since 2017. After taking the medication in an hour or so is when I feel the sidd effects which is headache and feeling tired. Since 2023 I am on it continuously. I have been taking 500mg which i managed fine with less headaches and managable tirdness. But 500mg wasn't making that much of difference as my platlates were at 1.3. I have reached out to have a second opinion and was advised to be on 1500mg a day. It was so shocking to me and I was worried how my body would react to it. I discussed it with my regular oncologist and deciddd to start with 1000mg first and see how I feel. I take it at night as the feeling of tired and the headache through out the day was a bit much. My hair falls off when brushing. The good thing is every two weeks my platlates has been going down by 200's so am at 640 now. I have an appointment again in a week so hopefully I will be back on 500mg once it's stabilized. The last three days my headache been feeling like migraine headache. Has anyone been feeling like this?
You have brought your platelet count down by 50%!
That is great.
I am so sorry to hear about your awful headaches, though. They must make your life really difficult.
Please ask your oncologist for help!
Hi @onthejoedock. Thought I’d take a moment to check in with you to see how your husband is doing. It’s been 6 months since we’ve chatted last so I wanted to see if his blood numbers have balanced with his Jakafi treatments. Has his energy level improved?
I was diagnosed with ET in November2022. Taking
1000 mg Hydroxuria daily. I have no side effects
other than getting a little tired in the afternoon.
Just noticed that my hair is thinning a little more.
It started about 10 years ago, might not have anything
to do with the Medication. Also had a total Hystorectemy about 6 weeks ago. I am almost 70
years old, lack of Hormones might be the problem.
Will talk to my Oncologist if Double Wood or something
similar is safe to take.
I am thankful to have found this forum. It helps to
talk to people with the same blood disorder . Thank you.
Hi @arlibertarian. Taking 1,500 mgs daily of HU is a hefty dose. What type of side effects are you experiencing?
Would you like to share a little more about what your diagnosis is and how long you’ve been taking the HU?