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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kit491903 | @kit491903 | 2 days ago

Other possible markers of mutation is good to know about what to consider.

Thanks

lynnebgraham | @lynnebgraham | 2 days ago

In reply to @kit491903 "Some commenters experienced a gradual increase of platelets. Mine shot up from 250 in July 2024..." + (show)

Hi, I am 73 and have ET triple negative. I was on Agralyn for 17 years, before my new dr wanted a bone marrow test done, to confirm what I had, as I had not had a bone marrow test prior to seeing him. Now on Hydroxyurea, since 2nd January, 2025. Have some fatigue, sun sensitivity. I am also type 2 diabetic It can be very daunting, getting this diagnosis, however, it can be controlled with medication, and just becomes part of every day life. Get out there and stay active, is my advice. My platelets are high at 652 but slowly coming back down from over 1000.
Take care.

kit491903 | @kit491903 | 2 days ago

It is amazing to have input from fellow travelers since doctors are in a clinical mode. I appreciate your advice and will carry on in my usual active lifestyle knowing that treatment can help in management . Thanks so much for your help. I love that we can help each other.

debhammel | @debhammel | 1 day ago

In reply to @kit491903 "Some commenters experienced a gradual increase of platelets. Mine shot up from 250 in July 2024..." + (show)

In my opinion, a bone marrow biopsy is crucial to determine if you have any other issues that could change your diagnosis or affect your treatment options. Don't let the term cancer scare you - or let the fact that HU is a chemo drug deter you from treatment. Most of us diagnosed from ET will live a long time with it and HU is very effective in managing this disease. Yes, there are side effects but if you read the patient information sheet provided with any prescription medication you'll see scarey side effects there as well. I was 68 when I was diagnosed two years ago, have been on HU ever since starting at 500 mg 2x daily 7 every day and reduced to 500 mg 2x a day, 4 days a week. My only side effects were initially short (less than 30 seconds), sharp headaches and mild hair loss, both of which have resolved.

kit491903 | @kit491903 | 1 day ago

In reply to @debhammel "In my opinion, a bone marrow biopsy is crucial to determine if you have any other..." + (show)

I have the same opinion and have already messaged my doctor to schedule it.

Thanks

cdurbin | @cdurbin | 1 day ago

In reply to @debhammel "In my opinion, a bone marrow biopsy is crucial to determine if you have any other..." + (show)

I agree even though it sucked, lol, Im glad it was done. It ruled out leukemia & reassured me that I had no other mutations. I was diagnosed last year at the age of 47. I can't take HU due to having an allergic reaction within 1 hr. of taking the 1st. dose. I only take a baby aspirin. My levels usually stay between 630 & 750. Due to my age & that Ive never had a blood clot, they are not too concerned at the moment. I go for labs every 3 months to monitor.

nypara66 | @nypara66 | 16 hours ago

In reply to @kit491903 "I have the same opinion and have already messaged my doctor to schedule it. Thanks" + (show)

I was given the option for a bone marrow test and did some research and decided against it. I was diagnosed with PV 1/22 from my labs and confirmation from JAK2 positive. The labs determine your medication and dosage and I was told that my treatment would be the same no matter what the biopsy showed. If my health declines and my numbers change, then I’ll reconsider. I do understand that some patients need that confirmation from this test due to the shock of their diagnosis. I had a few thoughts. Will it change my treatment? If the Doctor is comfortable with me not doing it, I should be too? And the cost was also a consideration. Even with insurance, it would be very costly. PV causes me to meet my deductible every year now in the first few months with phlebotomies, doctor visits and labs. Ask the right questions and do some research on reputable sites. You have to do what makes you comfortable.

dunewalker | @dunewalker | 15 hours ago

In reply to @kit491903 "Some commenters experienced a gradual increase of platelets. Mine shot up from 250 in July 2024..." + (show)

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.

kit491903 | @kit491903 | 14 hours ago

In reply to @dunewalker "After my JAK2 was found my O/H ordered a bone marrow biopsy which could be done..." + (show)

Thanks for the words of encouragement. I will carry on and keep your good wishes in mind while I go into Zen mode during the procedure. The best case for me will be a hospital visit with sedation. I will keep you posted.

jovida12 | @jovida12 | 13 hours ago

Dx of MPN Myeloproliferative disorder ET Essential thrombocythemia
JAK2 positive in June 2024. I am allergic to blue and green dye, hydroxyurea 500 mg ordered daily. The capsule is green and pink. I attempted to take it with Zyrtec for one week and broke out with a rash on legs and arms. Long story short, it comes in a white tablet that medicare initially denied but then an approval with copayment of $1000 dollars and it could be compounded by local pharmacy for same cost. My research indicates it comes in a white capsule but I was unable to find the supplier or cost. Pharmacist said to open it and put in applesauce and swallow. With all the warnings not to open the capsule and my own concern to expose my mouth and esophagus this was not an option. After joining a face book group with ET, it was suggested to purchase gelatin capsules and transfer contents. I put on gloves, a mask, and over a paper towel I remove the green part and put the drug and pink part in the gelatin capsule. I transfer enough for one week. Since this is a lifelong treatment I would like to ask if anyone here has this drug in the white capsule?
If so, who makes it? Thanks

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