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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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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.
Not sure this drug goes by weight? My hematologist looks directly at platelet count and Hematocrit and adjusts accordingly . Good luck.
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2 ReactionsHi, 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.
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2 ReactionsHi 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.
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2 ReactionsI’m sorry for your diagnosis. At your young age you have some challenges ahead. Perhaps one day in the near future this mutation can be reversed through gene therapy. It’s interesting that your hematologist says it’s a fluke. True scientists do not believe in “flukes”. There may be many reasons why a gene mutates, they just haven’t been discovered yet. Best of luck to you.
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3 ReactionsThank you so much for your reply. My doctor is insisting on Hydea but I have not started it. I agree to just take baby aspirin first. My primary whom I have never even met is insisting on liprinosil which I have not taken either as my BP is totally normal when I take it out of the doctor’s office. I have a detailed log to show her when I finally meet her this Friday. I did write myself a SMART goal to help me keep calm when I am there in the office which I am doing this week to hopefully be able to just relax there. I know I feel very anxious being there as I do not feel comfortable with the quick way all these meds were decided for me and previous experience with doctors there for my mom, dad, and daughter. I know I had a ton of labs done there recently and I am not an expert, but I do know me on my BP and did see my own BP machine read the highest I had ever seen it when they had me use to measure after they did twice. I am afraid at home I might actually faint as last night when I took my BP, it was 104/53. Normally it is not that low, more like 112/70, but it only takes one time to faint and fall and get a bigger issue right now.
You were fortunate to get a doctor who listened to you.
Thanks again for sharing.
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2 ReactionsThank you. You are correct in there may eventually be a way to reverse. My brother is a biochemist, PhD. & started looking into on-going studies once I was diagnosed. He says there are & some are even getting close. Only time will tell.
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3 ReactionsMy hematologist about 6 yrs ago diagnosed me with primary myelofibrosis at 71 yrs old, after finding elevated platelets (800), JAK2+, and fibrosis in my bone marrow. He wanted me to take HU 500mg/1000mg alternating day to day. I didn't like the feeling I had on the 1000 mg days, so I researched and found that HU comes in a Droxia formulation, which has dosages of 200, 300, 400mgs. (It's marketed for sickle cell anemia.) My hematologist said to take 600mgs/day. I have been taking it for 6 yrs without side effects besides some fatigue. It has lowered my platelets to normal levels, and helped prevent spleen enlargement. My other blood numbers have remained mostly normal, except my LDH is double what is normal. Ron
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5 ReactionsGood for you, preparing to make the best of your appointments! I hope you find a great doctor soon to help you make the best decisions.
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