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.
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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.
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
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. .?
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.
I take HU and hair was falling out in clumps. Essential Amino Acids stopped the hair loss, and my hair has completely grown back in, although it’s a little bit frizzy now. I use Doublewood brand that I order online. Maybe it will help you.
You are absolutely right
Fur ex, my onc wanted me to switch to Jakafi, very expensive, but covered by my insurance, because he felt it dies so much more. However, I experienced every negative side effect, including shingles, and had to go back on hydroxyurea
I’ve asked to switch to interferon to avoid the multiple skin cancers that require MOHS, but my dr says he doesn’t want to stop what is otherwise working for me. Said interferon can cause weakness, dizziness etc and I have osteoporosis and central pain syndrome from my stroke (So entire left side of my body is in constant burning, stinging pain with areas of numbness). He’s concerned I’ll fall. Bottom line, guess we have to each use what works best for us. I wish you the best and for your health to be good
84 years old on Hydroxyurea 10 years for Essential Thrombocythemia. Numbers usually 600-700. On 28 pills per week. I take 4 pills at night with a bit of food and water to avoid any stomach issues in the day. Yes hair loss has recently become a problem. Does not seem to be due to anything else but not getting much help with that. Serious issue for me and upsetting. Hematologist will barely discuss any issues as it seems he is centered only on the blood thing. I need to try to look after all of me and want to stay mobile. Not sure what to do.
Hair loss is absolutely a side effect from this drug. Many of us on here have stated that. Nerve pain and tooth pain is also a side effect that I have. Extreme sensitivity to sun also. You are so very lucky that you are doing so well on this drug. I’m on is for almost three years. Everyone is different and should pay attention once starting ANY new medication, specially a chemo drug.
Been on 500mg hydroxyurea since 2018. I am 79. Years old
Only side effect I ever experienced is skin cancers, which is a listed side effect
I go for more frequent skin checks with my dermatologist
to catch things early
No itching, fatigue, absolutely no hair loss ( not a side effect of this drug). My numbers are good
Have never needed phlebotomy since taking it. Hope you do well, whatever your choice
This is a tough time for your dad and your whole family.
Is your father's oncologist aware of all the other medical issues, and that your father's feeling weaker now?
This is a truly complicated case. HU is helpful to many thousands of people with sickle cell anemia, blood cancers and mouth and throat cancers.
Whether HU is benefitting your dad must be carefully assessed.
Hope you will hear soon from others with experience directly relevant to your father's situation.