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 | Mar 29 2:33pm

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

Thanks

lynnebgraham | @lynnebgraham | Mar 29 5:29pm

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 | Mar 29 10:39pm

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 | Mar 30 7:23am

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 | Mar 30 8:18am

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 | Mar 30 10:44pm

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 | Mar 31 6:45am

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 | Mar 31 8:22am

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 | Mar 31 8:59am

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.

1pearl | @1pearl | Mar 31 12:53pm

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

Hi,
I think it is a good idea to have a Bone Marrow Biopsy before treatment also. My O/H thought it unnecessary, but I asked for it to define exactly what I have. I was lucky my Senior Advantage Kaiser Plan paid for it I guess. But it showed I might “be transitioning from prefibrotic Myelofibrosis to Myelofibrosis” and not have ET. I have CALR mutation and still no symptoms, thank God. I have strange results on my blood labs I know. One thing constant is high platelets, so I take baby aspirin now. At first, O/H told me not to baby aspirin but to take only Hydrea twice per day which I never filled or took. Then she decided I could take baby aspirin. Honestly, the BMB did not hurt at all and I was not sore after. Our family did our evening walk together that evening as usual and all our usual exercise the following days. My lab on BMB day was the only one super strange time my lab showed low hemoglobin, high white cells and platelets high but almost 400 lower than first time measured two months earlier. My recent two labs have shown normal hemoglobin, lowering but still high white cells, and high platelets but not quite as high as first day measured measured in December 2024 when this blood cancer journey unfolded.
It will be interesting to hear what my O/H says in four days at my second appointment with her.

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