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What are most common side effects when starting HU (Hydroxyurea)?
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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I really wish you the best with your new tablet. 🤗
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3 ReactionsI was on hydroxides for awhile at 500 mg/day without significant side effects. I felt “blah” some days as I was first taking the drug but got used to it. You may discuss with your Dr gradually increasing to 1x per day rather than beginning that all at once.
I did not experience hair loss until he increased my dosage to 2x per day 3x per week and 1 pill the other days- At 500mg 1/ day I had no such side effect.
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2 ReactionsHi,
I think the dosage is supposed to be based on weight, but the pill comes in units of 500. I calculated that mine dose should be 750 total per day based on weight, but I was told to take two pills of 500 which honestly I gave not even started. I have not even met my primary doctor and was routed to hemotologist/oncologist after lab work. She said she was starting me on a very low dose which seems to not be quite true. I saw her eight days ago. First she wanted me to take the Hydrea I just described with baby aspirin but yesterday she sent a strange email telling me not to take the aspirin. Honestly, this whole ET diagnosis is just very confusing. I was perfectly fine other than have had a basal cell carcinomas removed and I have two non painful enlarged joints for which no doctors have been able to diagnose cause. I am blessed I am pain free and really just have the high risk as I am over 60 years old. Age alone seems like a strange way to develop treatment plan I my humble opinion.
Thanks for listening and have a blessed weekend.
Hi I have had ET for 16 years. Was on Anagrelide all that time, new haematologist and now on Hydrea 500gm once a day. Have been on 1 aspirin since I was diagnosed with Diabetes 24 years ago. Currently waiting for my platelets level to drop from 1250. Only been on Hydrea for 2 weeks now. No side effects yet. I never had any side effects with Anagralide either. New Dr is very thorough. Hope you settle soon. Cheers Lynne
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4 Reactions"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.
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4 ReactionsDosage is 15mg per kilo.
https://www.mayoclinic.org/drugs-supplements/hydroxyurea-oral-route/description/drg-20068109
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.
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.
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1 ReactionHi 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.
Hi,
I had read that also. Thanks for sharing where it came from with the link.