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

Posted by cdurbin @cdurbin, Jan 15 9:06am

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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It’s an individual thing as to HU side effects… I have PV take 1500 mg M-W-F and 1000 mg the other 4 days … That has been my dose for almost 2 years now… I take the HU pills usually around 7PM after I eat dinner… Overall, I have never felt better… I stay as active as I can, riding my bike, taking walks, etc.. I have experienced thinning hair and am careful about getting too much sun( use lots of sun block lotion), but other than that, I can’t link any other side effects to the HU.. My monthly blood draws show some impacts, low platelets and RBC count, but my oncologist who reviews the results puts a priority on keeping HCT levels ~ 40 and so far, that has been the case.. I consider myself lucky that I haven’t had the side effects many have posted … Best to all…

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@lschmeit

I was on hydroxyurea for 7 years. I tolerated it well at initial higher doses, then also at 500 mg per day long term. Did not feel like I was on chemotherapy all that time!
Some dry skin and minimal hair loss though now that I'm off of the medication I think it was more age-related!
Hope you do well!
Lynn

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Happy for you that you are off Hydroxyurea after taking for 7 years. Wanted to know how could you be off from this as Haemetologist told me it’s to be taken life long . What helped you in overcoming this and what’s your age and platelets count now. Please share

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I started HU 10 months ago. I take 500 mg 2x week. Initially, my oncologist wanted me to start at 3x week. I said, "No." For a month, I took iron and 2 baby aspirin per day. Platelets improved, but not enough. So, I added HU 1x week but the platelets increased a bit. I have settled in a 2x week with HU. I haven't lost hair, but I have dry skin, dry eyes, bruising, and bleeding gums. I see the dentist every 3 months for cleanings. My biggest complaint with HU is the fatigue and I am only taking it 2x week. I plan activities for the PM as I am too tired in the AM. I still wear a mask since HU decreased immunity. I have stayed healthy with no illness and no covid. I am up to date on all immunizations including Covid, flu, RSV, Shingles, and Pneumonia. I had to reduce baby aspirin to 1x day. Take care!

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@lschmeit

I was on hydroxyurea for 7 years. I tolerated it well at initial higher doses, then also at 500 mg per day long term. Did not feel like I was on chemotherapy all that time!
Some dry skin and minimal hair loss though now that I'm off of the medication I think it was more age-related!
Hope you do well!
Lynn

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What medication are you taking now?

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@lynnevb

What medication are you taking now?

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I’m on HU since October 2021 for PV and currently taking 500 mg 4x week. Have never had any side effects except once when I dropped a capsule in a glass of water and it got partially dissolved. Had a major case of the itches after I took that dose. I really think it has reduced the number of phlebotomy treatments that I started out with following my diagnosis.

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@beebo

I’m on HU since October 2021 for PV and currently taking 500 mg 4x week. Have never had any side effects except once when I dropped a capsule in a glass of water and it got partially dissolved. Had a major case of the itches after I took that dose. I really think it has reduced the number of phlebotomy treatments that I started out with following my diagnosis.

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That is really interesting. I am on three 500 mg capsules a week and until my counts stabilize, we will keep adjusting it. The disappointing thing is, I still haven’t found anything for when I have severe itching attacks. I take antihistamines and ibuprofen that helps a little, but they still last about a half hour then I’m done for the day. It’s crazy because I don’t even have to be by water. Have you found anything that helps the itching?

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I take 2 caps HU 500/daily since April 2021....and first year I had gut issues, some heartburn and fatigue, but I think that was ET, not HU. After first year, my gut got used to the HU, so no more side effects. My finger nails aren't what they used to be, but that could be old age issue, not ET or HU.

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@jerrlin

That is really interesting. I am on three 500 mg capsules a week and until my counts stabilize, we will keep adjusting it. The disappointing thing is, I still haven’t found anything for when I have severe itching attacks. I take antihistamines and ibuprofen that helps a little, but they still last about a half hour then I’m done for the day. It’s crazy because I don’t even have to be by water. Have you found anything that helps the itching?

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My itching was a one time only thing so I never needed to take anything once it went away. My doc did say that I might experience itching when he first put me on it and said he would give me a prescription if I needed it. Maybe you should ask your doc if you might look into that. Good luck!

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Has anyone developed weird thick vertical ridges on their nails?
Could it be ET, HU, age?

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I have been on HU for a year and a half at 500 mg daily. It brought my platelets from 800 to 250 within months. Absolutely no side effects. Don't dwell on thinking about side effects. Sometimes the power of suggestion will make you think you have side effects.

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