How fast do you start to feel hydroxyurea symptoms?

Posted by mlmk0601 @mlmk0601, Mar 16 1:14pm

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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@mikemp

I am 69 years old and I recently had a bone marrow biopsy because of a high platelet count (750). I started taking HU three days ago. So far, no symptoms.
I really appreciate all the comments and experiences. It has eased my worries about the drug.

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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!

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@mags17

I have been taking Hydrea for PV for almost 2 years. I have had considerable hair loss for the last 8 mths or so. Bald patches on top and back of my head. Worse still is the rash which is driving me crazy, is mainly on my shoulders & tops of my arms, few patches on my chest & throughout my scalp. I tried moisturisers, to no avail. Did have rash for a couple of weeks last year but was so relieved they faded away. I'm tired all the time and struggle to do the basic housework. I will be 77 in June.

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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

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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.

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I did fine for 3 months then got a very itchy rash and ran a high fever.

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@didyolsn

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

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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.

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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?

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@563m209

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?

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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!

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@onthejoedock

Aww sorry you had to go through all that I should've been more organized, but my mind works and works and works and maybe maybe something else could be done or to give Joe energy but I guess we're on the right track and I'll just maintain and be happy with everything staying OK and not getting worse thank you so much, though. I appreciate all the knowledge you passed on to me, check out the doctors response on the 18th. Thank you so much. Take care of yourself.

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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?

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@didyolsn

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

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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.

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@arlibertarian

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.

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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?

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