What are most common side effects when starting HU (Hydroxyurea)?
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.
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect

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.
-
Like -
Helpful -
Hug
3 ReactionsHope 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. .?
-
Like -
Helpful -
Hug
2 ReactionsHi 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
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.
-
Like -
Helpful -
Hug
9 ReactionsCheck your thyroid levels
I was given that as a reason..
Could be many reasons.
@mumblipeg
I asked my doc if HU would cause Neuropathy and he said no.
Itching is often mentioned
I haven't had that issue
Does make you more susceptible to basal cell
carcinomas… i have had multiples of these , even tho i wear sunscreen daily and shield myself from the sun
Does work to keep my numbers
good
-
Like -
Helpful -
Hug
1 ReactionI’m 84, been on HU for a year and a half, 500 mg daily, and had no side effects, no hair loss. My neuropathy is related to my blood cancer and predates the HU so unrelated.
It has worked well for me.
-
Like -
Helpful -
Hug
3 ReactionsBeen on HU going on 8 years, same dose, 500 mg every day plus extra 500 on M-W-F. My hair dresser, who hadn't seen me for a few years, said this month, "Your hair looks good. It's thicker!" That was my sense, too, but I was afraid it was wishful thinking. Many of us do have initial hair thinning, but it can get better as our bodies get used to it.
-
Like -
Helpful -
Hug
6 ReactionsHello,
I’ve been on it for three years. I’m 59 with PV JAK2 positive. Hair thinning that does get better after time, extreme sensitivity to sunlight, tooth pain, like someone punched you in the mouth or you had a root canal and also tiny brown spots in your skin. The dermatologist said that it brings up past sun damage so be sure to wear sunscreen. Depending on dosage, your body does adjust and side effects cone and go. Good luck!
-
Like -
Helpful -
Hug
5 Reactions