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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@janetbender

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

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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.

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

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@janetbender

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

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

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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.

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@nypara66

I read it wasn’t available until 2011? Hydroxyurea has been available since the 1960’s. It is extremely inexpensive as opposed to the over 8k a month for the other which also has a higher risk of side effects. I guess which ever works best is best but that the drug companies can rob patients that need meds such as these, should be thrown in jail!

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It was FDA approved in 1997 as Agrylin....not generic Anagrelide until 2005 or so. It was new when my very high platelet count was noted, re-directing me to oncology hemotologist. He suggested the new drug, see if it worked, without even a bone marrow biopsy. It worked, and worked until he retired, a new doctor within my care providers started his Frankenstein work on me. Happy to have self-advocated for a switch after 3-4 horrible months with hydroxyurea. That was probably around 2010.

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@nohrt4me

Anagrelide is contraindicated for some people with heart problems, as it can cause arrhythmia. It was my first choice over HU, but my cardiologist nixed it. Dad, on the other hand, did well on anagrelide.

A couple of years ago, there was a shortage of anagrelide that a few people reported in another ET support group. It's possible that doctors stopped prescribing it or moved patients to HU because of that.

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I recall difficulty getting the dosage I take (5 mg twice daily weekdays, once weekends) in late 2019. I was going crazy with worry until I was able to actually get it (cash) through Canada. Further inquiry said that one of the anagrelide hydrochloride was primarily sourced from CHINA, which had problems of it's own, hence the shortage. Since I get 90 days supply for $20 co-pay, by the time I needed a refill it was back on the market. Maybe I was taking 10 mg capsule once a day for a bit. Thanks for the info on arrhythmia....that's something my sisters both suffer from tho not me! I didn't have a cardiologist when ET was first diagnosed, active late 40s so.....

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ForCDurbin: I am a 75 year old female and have been on HU for a year. I don't think there is a "magic number" for HU. I take 1000mg and alternate daily with 1500mg. I have had no side effects except fatigue, which is a problem, but better than the alternative of stroke or heart attack. I have no hair loss or other worrisome side effects. It was worth taking HU for me but everyone's body reacts differently to meds. Only you can determine if it's worth it for you.

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(Replying to questions about nail chipping and breaking and vertical ridges)

I think it is just part of the aging process, because it started doing that for me before my diagnosis. (But maybe I was already into ET, just not diagnosed, so it MAY be part of ET )

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I just started on Hydrea in Nov 2023. I am not clear on if changes I am experiencing are a result of ET, Hydrea or age. Changes I have observed include acne and fatigue. However, I was fatigued for years prior to being diagnosed with ET. My hair has also been thinning for years. I pray Hydrea does not further contribute to hair loss.

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I had some hair loss for the first few months until they lowered the dosage. Also, my teeth and gums felt sore and sensitive all the time. My oncologist said to hang in there and let my body adjust and I did and so did my body thankfully. The lower dose stopped my hair loss and my gums are back to normal. I also noticed tiny brown spots. Went to the dermatologist and he did that chemo drugs intensify past sun damage causing brown spots to come to the surface and to go every year to get my skin checked. I’m taking it since Jan 23. Good luck 😊

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