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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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janemc | @janemc | 1 day ago
In reply to @lynnebgraham "I am also inerested in what medication you are currently taking. I was on Anagrelide for..." + (show)
@lynnebgraham

I am also inerested in what medication you are currently taking.
I was on Anagrelide for over 15 years. No side affects at all. Apparently taking Anagrelide for long period can cause Myelofibrosis. Currently waiting results of Bone Marrow test and my GP told me to take Hydroxyurea till I seed specialist as my platelet count was dangerously high. No one told me it was a chemotherapy treatment. I found out that by dr google.

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Yes, hydroxyurea (HU) is a chemo drug -- nobody likes the sound of that. I'm so sorry you didn't get a better explanation from your GP.

HU has been used for decades to treat not just ET and other MPNs, but also for sickle cell anemia. It helps lots of people every day.

And now it is helping you too.

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1 reply
nypara66 | @nypara66 | 1 day ago
In reply to @lynnebgraham "I am also inerested in what medication you are currently taking. I was on Anagrelide for..." + (show)
@lynnebgraham

I am also inerested in what medication you are currently taking.
I was on Anagrelide for over 15 years. No side affects at all. Apparently taking Anagrelide for long period can cause Myelofibrosis. Currently waiting results of Bone Marrow test and my GP told me to take Hydroxyurea till I seed specialist as my platelet count was dangerously high. No one told me it was a chemotherapy treatment. I found out that by dr google.

Jump to this post

Yea for some reason they never tell you that? I found out also by reading about it after prescribed. Sucks I’ll be on it for life with having PV. I’m two years in this month and it’s under control but I hate the meds! Jakafi is super Expensive and the only other choice for PV patients. It also can cause organ damage, but they monitor with labs. I’m glad you tolerated it well but sad that you developed something else now from the meds. Blood illnesses suck!

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1 reply
nypara66 | @nypara66 | 1 day ago

I started on seven days a week and felt like crap. Hair loss, and super sensitive to sunlight, even through my clothes. Also I had inflamed gums and tooth sensitivity. My doctor said to hang in there and let my body adjust. After two months I was lowered to five days a week and seven months in I was lowered to three days a week which I’ve been taking now about 18 months. I have very little side effects now and my platelets are in the 400’s. They were at 840 when I began. I am 58 and was diagnosed with Polycythemia Vera two years ago. Give it a chance. It’s been around since the 1960’s which is very reassuring to me.

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eferret | @eferret | 1 day ago
In reply to @lynnebgraham "I am also inerested in what medication you are currently taking. I was on Anagrelide for..." + (show)
@lynnebgraham

I am also inerested in what medication you are currently taking.
I was on Anagrelide for over 15 years. No side affects at all. Apparently taking Anagrelide for long period can cause Myelofibrosis. Currently waiting results of Bone Marrow test and my GP told me to take Hydroxyurea till I seed specialist as my platelet count was dangerously high. No one told me it was a chemotherapy treatment. I found out that by dr google.

Jump to this post

I would recommend anyone on hydroxyurea to look into Besremi. It has been shown to significantly reduce the risk of myelofibrosis, which can occur in 20-30 percent of people with MPN's like PV or ET 10-12 years after diagnosis.
You can go online and read about the benefits of taking Besremi at besremi.com. There is a phone number on the website to call PharmaEssentia to apply for financial assistance to pay for Besremi. PharmaEssentia can help coordinate the pre-authorization process with your insurance provider.
I am taking hydroxyurea and asked my doctor to consider putting me on Besremi because with my severity of PV I have a higher risk of blood clots and myelofibrosis. I hope to hear from PharmaEssentia this week.

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1 reply
lynnebgraham | @lynnebgraham | 1 day ago
In reply to @eferret "I would recommend anyone on hydroxyurea to look into Besremi. It has been shown to significantly..." + (show)
@eferret

I would recommend anyone on hydroxyurea to look into Besremi. It has been shown to significantly reduce the risk of myelofibrosis, which can occur in 20-30 percent of people with MPN's like PV or ET 10-12 years after diagnosis.
You can go online and read about the benefits of taking Besremi at besremi.com. There is a phone number on the website to call PharmaEssentia to apply for financial assistance to pay for Besremi. PharmaEssentia can help coordinate the pre-authorization process with your insurance provider.
I am taking hydroxyurea and asked my doctor to consider putting me on Besremi because with my severity of PV I have a higher risk of blood clots and myelofibrosis. I hope to hear from PharmaEssentia this week.

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Please let me know how you go. Good luck

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ksyren | @ksyren | 9 hours ago
In reply to @nypara66 "Yea for some reason they never tell you that? I found out also by reading about..." + (show)
@nypara66

Yea for some reason they never tell you that? I found out also by reading about it after prescribed. Sucks I’ll be on it for life with having PV. I’m two years in this month and it’s under control but I hate the meds! Jakafi is super Expensive and the only other choice for PV patients. It also can cause organ damage, but they monitor with labs. I’m glad you tolerated it well but sad that you developed something else now from the meds. Blood illnesses suck!

Jump to this post

I wasn't told either - just that it was "medicine" - but since I had not been told it was a blood cancer, no surprise. I also did my own research online (Mayo and Cleveland Clinic) and found out what I had was a blood cancer, why I was called a high risk and what "medicine" I would be given. When the box arrive, it was labeled "HAZMAT - ground transportation only!" If I hadn't researched, I probably would have fainted! Fortunately, I am now with a very transparent doctor, very collaborative so far. Everyone's comments are SO helpful. Nice to have a place where everyone "gets it!"

REPLY
1 reply
ksyren | @ksyren | 9 hours ago
In reply to @janemc "Yes, hydroxyurea (HU) is a chemo drug -- nobody likes the sound of that. I'm so..." + (show)
@janemc

Yes, hydroxyurea (HU) is a chemo drug -- nobody likes the sound of that. I'm so sorry you didn't get a better explanation from your GP.

HU has been used for decades to treat not just ET and other MPNs, but also for sickle cell anemia. It helps lots of people every day.

And now it is helping you too.

Jump to this post

Amen!

REPLY
lynnebgraham | @lynnebgraham | 8 hours ago
In reply to @ksyren "I wasn't told either - just that it was "medicine" - but since I had not..." + (show)
@ksyren

I wasn't told either - just that it was "medicine" - but since I had not been told it was a blood cancer, no surprise. I also did my own research online (Mayo and Cleveland Clinic) and found out what I had was a blood cancer, why I was called a high risk and what "medicine" I would be given. When the box arrive, it was labeled "HAZMAT - ground transportation only!" If I hadn't researched, I probably would have fainted! Fortunately, I am now with a very transparent doctor, very collaborative so far. Everyone's comments are SO helpful. Nice to have a place where everyone "gets it!"

Jump to this post

Hello @ksyren, yes, it is really nice to be able to chat with people who are in the same boat.
Where would we be without Dr Google? Mayo Clinic is a wealth of information. Sometimes too much information is just a worry. My hematologist mentioned myelofibrosis at my last visit, he was still waiting for bone marrow test results. So, I google, myelofibrosis, wish I hadn't now. A bit worried about what will come next. Why would you say something like that if you still hadn't had all the results? Oh well will find out tomorrow when I see him. My GP is great.

REPLY
1 reply
ksyren | @ksyren | 3 hours ago
In reply to @lynnebgraham "Hello @ksyren, yes, it is really nice to be able to chat with people who are..." + (show)
@lynnebgraham

Hello @ksyren, yes, it is really nice to be able to chat with people who are in the same boat.
Where would we be without Dr Google? Mayo Clinic is a wealth of information. Sometimes too much information is just a worry. My hematologist mentioned myelofibrosis at my last visit, he was still waiting for bone marrow test results. So, I google, myelofibrosis, wish I hadn't now. A bit worried about what will come next. Why would you say something like that if you still hadn't had all the results? Oh well will find out tomorrow when I see him. My GP is great.

Jump to this post

Holding a good thought and lifting a prayer for your appointment tomorrow. We'll be waiting to hear your news. And what would we do without our GPs to help us with the big picture. Mine is awesome when it comes to providing a healthy perspective on things. (and it helps that he's an incredible listener)!

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