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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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pelicanpoint | @pelicanpoint | Aug 14 12:19pm
In reply to @mcmdcreek "My dad was diagnosed with PV last April. He is 97 years old, has diabetes, and..." + (show)
Profile picture for mcmdcreek @mcmdcreek

My dad was diagnosed with PV last April. He is 97 years old, has diabetes, and an intestinal obstruction. He has been frequently admitted to the hospital for bowel obstruction. The doctor suggested taking the HU (500 mg daily). All family members are against the medication. They are worried that he might not be able to tolerate it, and the pill may do more harm than good. Since then, he has been getting weaker gradually. Does anyone have experience with seniors on HU usage?

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I'm 71 been on HU for a few years no side effects really except for feeling better as my Hematocrit is kept in check . I do have a friend with mouth sores as a result of the drug but myself nothing. They say HU has been around for ever.

Now that said I have a wound on my foot that won't heal I walk over 2000 kms per year and had a cut from the constant wear. Any way my Doc took me off the HU 6 weeks ago and it still won't heal. So I can't say.

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huronshores | @huronshores | Aug 14 5:15pm
In reply to @pelicanpoint "I'm 71 been on HU for a few years no side effects really except for feeling..." + (show)
Profile picture for pelicanpoint @pelicanpoint

I'm 71 been on HU for a few years no side effects really except for feeling better as my Hematocrit is kept in check . I do have a friend with mouth sores as a result of the drug but myself nothing. They say HU has been around for ever.

Now that said I have a wound on my foot that won't heal I walk over 2000 kms per year and had a cut from the constant wear. Any way my Doc took me off the HU 6 weeks ago and it still won't heal. So I can't say.

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Hope all is well. In past couple of years I developed leg ulcer on back of calf. It was there all through a spring, summer , then my family Dr decided it should be biopsied just in case.
Was really a mess after that, biopsy showed not cancer but I developed infection and had to get antibiotics. Infection cleared but still no complete healing.
Hematologist stopped Hydroxyurea for about a month. U I decided to try Aloe Vera gel on it a couple times a day and kept is cleanly covered. Eventually that did seem to heal it. Several months later, started to develop ulcer again same spot and also on back of other calf! Aloe Vera Gel again and in a month or two both cleared. Think I might be on too high a dose at 28 pills a week. .?

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pelicanpoint | @pelicanpoint | Aug 14 5:58pm
In reply to @huronshores "Hope all is well. In past couple of years I developed leg ulcer on back of..." + (show)
Profile picture for huronshores @huronshores

Hope all is well. In past couple of years I developed leg ulcer on back of calf. It was there all through a spring, summer , then my family Dr decided it should be biopsied just in case.
Was really a mess after that, biopsy showed not cancer but I developed infection and had to get antibiotics. Infection cleared but still no complete healing.
Hematologist stopped Hydroxyurea for about a month. U I decided to try Aloe Vera gel on it a couple times a day and kept is cleanly covered. Eventually that did seem to heal it. Several months later, started to develop ulcer again same spot and also on back of other calf! Aloe Vera Gel again and in a month or two both cleared. Think I might be on too high a dose at 28 pills a week. .?

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Hi HuronShores

Well isn't that funny I just inherited from daughter in law two very healthy Aloe Vera plants
Tonight I start.

Thanks a bunch

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jackiecarey | @jackiecarey | Aug 15 9:42am
In reply to @mcmdcreek "My dad was diagnosed with PV last April. He is 97 years old, has diabetes, and..." + (show)
Profile picture for mcmdcreek @mcmdcreek

My dad was diagnosed with PV last April. He is 97 years old, has diabetes, and an intestinal obstruction. He has been frequently admitted to the hospital for bowel obstruction. The doctor suggested taking the HU (500 mg daily). All family members are against the medication. They are worried that he might not be able to tolerate it, and the pill may do more harm than good. Since then, he has been getting weaker gradually. Does anyone have experience with seniors on HU usage?

Jump to this post

I would be considered a senior at 78 however, your father has 20 years on me. Is your father able to make the decision himself? If not I found 500mg a day 7 days a week to be harsh, stomach issues, headaches, sweating, extreme fatigue, general feeling of malaise, inability to sleep and on and on... after about a year I tolerated HU much better...If it was my father with your father's current medical conditions and age I would seriously consider doing nothing. In the end if your father is competent it's his decision, if not, then it's the family's decision. I wish all of you peace with your decision.

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