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

Posted by cdurbin @cdurbin, Jan 15, 2024

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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nypara66 | @nypara66 | Apr 20 7:00am
In reply to @janemc "Shame on your sisters, lynnevb! Not asking how you are, not informing themselves about what you're..." + (show)
@janemc

Shame on your sisters, lynnevb! Not asking how you are, not informing themselves about what you're going through -- they are really letting you down.

It's possible they find it painful to acknowledge that a loved one is suffering. Still, that would be putting themselves first, and you last.

They don't deserve to have such a forgiving sister. Please choose really tacky birthday gifts for them.

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I loved your response! Maybe the sister would get the hint then but probably not 🤣🤣

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nohrt4me | @nohrt4me | Apr 20 8:50am
In reply to @lynnevb "These stories about others reaction to an ET diagnosis is spot on. I have had it..." + (show)
@lynnevb

These stories about others reaction to an ET diagnosis is spot on. I have had it for 23 years and neither of my sisters ever ask me about it. If I bring it up they change the subject. A couple of times a sent them articles to read about it. Neither responded and when I inquired they said the articles were too long so they did not read. There is lots of evidence that they do love me but their response to this diagnosis and ongoing challenges is truly a head scratcher.

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Your sisters sound like most of my family and friends. I know they love me, but they don't ask about ET. I think they see that I look and act normally, don't seem to be in pain, so they assume it went away. I was having coffee with a friend and she noticed that I had been to the lab to get my blood test. "I hope that blood thing isn't back," she said. I don't bother to disabuse them. They clearly don't wanna think about it.

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lynnevb | @lynnevb | Apr 20 7:30pm
In reply to @janemc "Shame on your sisters, lynnevb! Not asking how you are, not informing themselves about what you're..." + (show)
@janemc

Shame on your sisters, lynnevb! Not asking how you are, not informing themselves about what you're going through -- they are really letting you down.

It's possible they find it painful to acknowledge that a loved one is suffering. Still, that would be putting themselves first, and you last.

They don't deserve to have such a forgiving sister. Please choose really tacky birthday gifts for them.

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janemc, You made me laugh out loud. Thank you for that!

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kit491903 | @kit491903 | Apr 30 3:41pm
In reply to @dunewalker "After my JAK2 was found my O/H ordered a bone marrow biopsy which could be done..." + (show)
@dunewalker

After my JAK2 was found my O/H ordered a bone marrow biopsy which could be done right at the cancer center. An experienced and sympathetic person tried three times but was unsuccessful in getting a specimen. Although the area was numbed, each try was very painful, but I wanted them to keep trying so we’d have a definite diagnosis. I had a fourth biopsy in the hospital where I was sedated and they could use special equipment; that effort was successful and we knew what we were dealing with.
While the pain of the first three tries was extreme, it was short-lived with no adverse results. I’m glad we followed through and could better understand my condition (myelofibrosis). I’ve been on hydrea for almost a year (500mg daily) and continue to live an active and fulfilled life, enjoying my volunteer work, travel, and family. I’m 83.
Try to go ahead with this biopsy so your doctor can know for sure what direction to take. A few minutes of pain is worth the knowledge gained.
Please let me know how it goes for you - I’ll be rooting for you to be strong. You’ve done harder things, I’m sure, and you can do this.

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Hey dunewalker,

I did the bone marrow biopsy last week at Mayo and went over results with Dr. yesterday. There were 2 mutations, JAK2 6% and ASXL1 8.6% . He said that the low values under 10% were not concerning. My diagnosis is still Essential Thrombocythemia. Now we know what I don't have so far !

The bone marrow biopsy was no big deal. I experienced this type of feeling when had a temporary sciatica episode in 1999 and this procedure gave me a 2 on 10 scale sciatica feeling. I made sure to notice it as a feeling rather than pain. It was a fluttering nerve disturbance and was fleeting.

04/03/25 Platelets were 540. Begin 500mg Hydroxyurea every other day.
04/22 platelets 440. After only 10 pills, the 100 point reduction was a surprise.

Of the 2 doctors I have seen for this I have decided to make the 40 minute drive to Mayo rather than staying with the doctor close to home. I am also 40 minutes drive to MD Anderson another stellar choice . The Mayo campus is tranquil and beautiful which enriches the experience of going there by way of the coastal highway A1A whereas MD Anderson is next to a busy freeway in an urban setting, so being there is part of the treatment experience that I considered , especially since my husband and dogs appreciate the enjoyable waiting period in the shade or in an outdoor cafe.

Since patients come to Mayo from all over the world for treatment, I am very lucky to be able to make that choice . The patient experience is very important to Mayo and they make every accommodation beginning with patient drop off areas and valet parking to hotels and restaurants on the their campus. All medical and lab services are readily available including virtual follow up doctor visits if anyone is curious about how to manage long distance treatment at Mayo Jacksonville.

Thanks for rooting for me.

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