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

Posted by cdurbin @cdurbin, Jan 15, 2024

What are the side effects most experienced when starting the HU? I'm still trying to decide if I'm going to start it on 1/26/24. My hematologist said we would go over the side effects then but I want to know what most have experienced since they would only report what "could" happen & not what DOES happen. Ex. It's a chemo pill- they usually cause hair loss. Does this apply with the dosages that we would need? After reading other posts, it's sounds like maybe 500 mg is the magic number for the HU dosage.

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irishnanny3 | @irishnanny3 | Apr 1 3:30pm
In reply to @1pearl "Hi @irishnanny3 , I wear sunscreen and a wide brimmed hat daily and have been for..." + (show)
Profile picture for 1pearl @1pearl

Hi @irishnanny3 ,
I wear sunscreen and a wide brimmed hat daily and have been for years. I haven’t even taken Hydrea ever, and I have had four basal cell carcinomas removed, numerous actinic keratoses frozen with liquid nitrogen, and just recently a skin biopsy on my face on my side of cheek came back as melanoma insitu and I had a slow Moh’s started. I was not told it would not be removed in one day so that was disappointing yesterday. Anyway, with all the skin issues I have had already, I choose not to take Hydrea as I feel just fine, no symptoms, no heart issues, no clots, not overweight, and exercise daily. Also, my oncologist/hemotologist did not seem to know if I have essential thrombocytosis or primary myelofibrosis. I will have a new insurance starting January 1 which I am hoping will be better. Also, I have CALR1 mutation.

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@1pearl Hi Pearl
Since my PV was discovered when I had a stroke and two dvt’s I’ll be taking the hydroxy forever
along with Eliquis
I tried to have it changed to another drug, but my
onco says he doesn’t want to change what works🤷‍♀️
My best wishes to you

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lynns51 | @lynns51 | 17 hours ago
In reply to @1995victoria "My fingernails tend to splinter more and break Don't know if HU, ET or old age????" + (show)
Profile picture for 1995victoria @1995victoria

My fingernails tend to splinter more and break Don't know if HU, ET or old age????

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@1995victoria I just read your post, but I’m interested in if your fingernails have improved. I always had great nails, but terrible hair! My hair is very thin and very fine. My ears stick out if I wear it straight. My doctor put me on Hydrea 500 mg. twice daily. My nails are now brittle, and the skin under them is blackish to dark brown. I was so exhausted, I thought I had COVID again! My platelets fell to around 250 and my doctor wanted me to keep taking that much Hydrea. I begged for a lower dose as my platelets were still dropping. He prescribed 500 mg once a day. Fatigue improved, but my nails continue to grow darker. My hair is falling out, but maybe it would have anyway as I am 75. Who knows? That part is most annoying! I would like to paint my nails, but that hasn’t worked too well as the brittle tips keep braking, peeling, and my unsteady old hands make a mess of it though I keep trying! These are small matters though compared to a stroke or embolism! I hope you have continued to improve ! I am rooting for us all!

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1995victoria | @1995victoria | 6 hours ago
In reply to @lynns51 "@1995victoria I just read your post, but I’m interested in if your fingernails have improved. I..." + (show)
Profile picture for lynns51 @lynns51

@1995victoria I just read your post, but I’m interested in if your fingernails have improved. I always had great nails, but terrible hair! My hair is very thin and very fine. My ears stick out if I wear it straight. My doctor put me on Hydrea 500 mg. twice daily. My nails are now brittle, and the skin under them is blackish to dark brown. I was so exhausted, I thought I had COVID again! My platelets fell to around 250 and my doctor wanted me to keep taking that much Hydrea. I begged for a lower dose as my platelets were still dropping. He prescribed 500 mg once a day. Fatigue improved, but my nails continue to grow darker. My hair is falling out, but maybe it would have anyway as I am 75. Who knows? That part is most annoying! I would like to paint my nails, but that hasn’t worked too well as the brittle tips keep braking, peeling, and my unsteady old hands make a mess of it though I keep trying! These are small matters though compared to a stroke or embolism! I hope you have continued to improve ! I am rooting for us all!

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@lynns51 yes, my nails aren't what they used to be, but then again neither am I, almost 6 years older than you. Luckily I always had thick hair. Just before the pandemic I stopped coloring my hair, went front white with salt/pepper at back. My hair was dry and breaking from hair dye, much better now, but not as thick as when I was 30 (but neither am I)

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