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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bradsf007 | @bradsf007 | Jan 24 3:38pm

Kept my hair but it did exacerbate my gingivitis/gum disease. Been taking since 2015. No other side effects for me as far as I can tell.

hariom1961 | @hariom1961 | Jan 24 9:12am

In reply to @janetbender "Has anyone developed weird thick vertical ridges on their nails? Could it be ET, HU, age?" + (show)

Yes it’s mostly due to HU. But we don’t have a choice

janetbender | @janetbender | Jan 24 8:20am

I’ve been hypothyroid for decades but never considered that. Thanks!

debhammel | @debhammel | Jan 24 7:57am

In reply to @janetbender "Has anyone developed weird thick vertical ridges on their nails? Could it be ET, HU, age?" + (show)

I have them but they predate my starting on HU. I'm 69 years old and there's all kinds of speculation on why these occur - could be nutrition, in my case it could be that I have hypothyroidism, but no one seems to know for sure.

bevjg | @bevjg | Jan 24 7:33am

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.

janetbender | @janetbender | Jan 24 6:52am

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

beebo | @beebo | Jan 24 12:07am

In reply to @jerrlin "That is really interesting. I am on three 500 mg capsules a week and until my..." + (show)

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!

1995victoria | @1995victoria | Jan 23 12:33pm

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.

jerrlin | @jerrlin | Jan 23 7:16am

In reply to @beebo "I’m on HU since October 2021 for PV and currently taking 500 mg 4x week. Have..." + (show)

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?

beebo | @beebo | Jan 22 12:15am

In reply to @lynnevb "What medication are you taking now?" + (show)

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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