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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

cdurbin | @cdurbin | Jan 20 11:21am

In reply to @stickball1 "Baby aspirin (81mg) should be taken prophylactically every day if you’re over 60 even if you’re..." + (show)

Hi I am. 48 & was diagnosed last year. I'm jak12 positive. My hematologist explained that it was just a fluke that the gene mutated. I sometimes wondered if it has something to do with me being a natural red head since that is also caused by a gene mutation, lol. I've never had a blood transfusion. I've always been pretty healthy. Mine was found when I decided to have routine blood work done since it had been probably 5 or 6 yrs since my last lab check. I thought I was having menopause symptoms start but turns out all of my symptoms matched the ET symptoms as well. I started feeling the main symptoms about 1.5 yrs before I got my official diagnosis.

cdurbin | @cdurbin | Jan 20 11:07am

In reply to @1pearl "Hi lynnevb, Thank you for you useful website information. I started reading it and you are..." + (show)

Hi, I am 48 & was diagnosed last year with ET- JAK12 positive. My hematologist at first started me on the Hydroxyurea but I broke out in rash for 3 days before they decided to have me stop it. I am considered low risk due to never having blood clots or other issues other than elevated platelets. Mine for now are treated with a baby Aspirin. I also started taking vitamin D after doing some research to naturally lower them. I read that vitamin D has an affect on lowering platelets. It could be just a fluke but I get labs every 3 months & my last levels were 623. I know the levels fluctuate but I have had other levels in the 600 range as well so I feel like something I'm doing is helping. My highest levels since my diagnosis was 780 something. I go for my next labs in April. Hopefully your doctor will hold off on the Hydroxyurea if possible. My doctor told me it just helps with lowering the platelets so that is why she was comfortable with taking me off it for now. If something changes & they start going up we will revisit my meds.

nypara66 | @nypara66 | Jan 20 7:30am

In reply to @arlibertarian "Dosage is 15mg per kilo. https://www.mayoclinic.org/drugs-supplements/hydroxyurea-oral-route/description/drg-20068109" + (show)

Not sure this drug goes by weight? My hematologist looks directly at platelet count and Hematocrit and adjusts accordingly . Good luck.

janemc | @janemc | Jan 20 6:33am

In reply to @arlibertarian "Dosage is 15mg per kilo. https://www.mayoclinic.org/drugs-supplements/hydroxyurea-oral-route/description/drg-20068109" + (show)

Thank you for the link to this helpful article. It contains a lot of important information we all need to learn.

Please note, it doesn't mention using HU for ET. Perhaps dosing is different for our cancer?

After my ET diagnosis, I first took one 500-mg capsule of HU a week. To push my platelet count down from the 700s, gradually my oncologist increased my dosage to the current level, 10 a week.

My weight has not changed.

1pearl | @1pearl | Jan 19 9:06pm

In reply to @arlibertarian "Dosage is 15mg per kilo. https://www.mayoclinic.org/drugs-supplements/hydroxyurea-oral-route/description/drg-20068109" + (show)

Hi,
I had read that also. Thanks for sharing where it came from with the link.

1pearl | @1pearl | Jan 19 8:58pm

In reply to @lynnevb "Hello 1pearl, Here is a website I think you will find helpful. https://www.nccn.org/patients/guidelines/content/PDF/mpn-patient.pdf It takes a..." + (show)

Hi lynnevb,
Thank you for you useful website information. I started reading it and you are right, I will need to read it again to comprehend it all better. I did pull out an interesting that applied to my ET diagnosis. Rather than being high risk, just being over 61 years old with no JAK2 and never had a blood clot seems to say manage cardiovascular risk factors and take aspirin but does not state Hydrea necessary. I would love to begin that way.
Thank you for sharing that website.

lynnevb | @lynnevb | Jan 19 2:21pm

In reply to @1pearl "Hi, I think the dosage is supposed to be based on weight, but the pill comes..." + (show)

Hello 1pearl,

Here is a website I think you will find helpful.
https://www.nccn.org/patients/guidelines/content/PDF/mpn-patient.pdf
It takes a couple of readings but slowly you will learn about this diagnosis.
Hope you can see your hematologist/oncologist soon.

stickball1 | @stickball1 | Jan 19 10:14am

In reply to @1pearl "Hi, I think the dosage is supposed to be based on weight, but the pill comes..." + (show)

Baby aspirin (81mg) should be taken prophylactically every day if you’re over 60 even if you’re in good health. That’s a no-brainer. As I’ve said in previous posts, the secret to controlling your ET is finding the right hematologist, periodic blood testing and paying attention to any body changes. I’m 87 years old and quite active for my age. I had successful bypass surgery in April of 2024 and the ET diagnosis showed up after surgery. I’m convinced that I acquired the JAK-2 gene mutation which led to the ET diagnosis through blood transfusions I received during the surgical event. So far I’ve not heard from anyone on this blog if the same diagnosis occurred after they’ve received blood transfusions.

arlibertarian | @arlibertarian | Jan 19 8:25am

In reply to @janemc ""Very confusing" indeed. It does seem you have been given partial, conflicting information. Unfortunately, ET is..." + (show)

Dosage is 15mg per kilo.
https://www.mayoclinic.org/drugs-supplements/hydroxyurea-oral-route/description/drg-20068109

janemc | @janemc | Jan 19 6:35am

In reply to @1pearl "Hi, I think the dosage is supposed to be based on weight, but the pill comes..." + (show)

"Very confusing" indeed.

It does seem you have been given partial, conflicting information.

Unfortunately, ET is so uncommon that no one fully understands it. Your primary doctor may or may not know anything about it.

You can feel fine but still have dangerously high levels of platelets.

Addressing that is important.

HU (hydrea) is used to slow down over-production of platelets. You're right, it comes in 500 mg capsules. As far as I know, dosage is not based on our weight.

You're right in saying that our age is taken into consideration. Arbitrary, yes, but I guess there must be a statistical basis for that.

Good doctors start us on low doses, so that our bodies can adapt to the new medication.

Low-dose aspirin is sometimes added because it makes our platelet-heavy blood slippery, reducing the danger of clotting and strokes.

Only your own hematologist knows whether -- based on your own lab results and history -- taking HU and aspirin will help you. For some people, taking aspirin isn't a good idea.

Waiting for your doctors to figure this out is really hard!

Hoping you get some clarity soon.

View More View Less

Please sign in or register to post a reply.