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 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

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 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.

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 2:33pm

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

Thanks

cdurbin | @cdurbin | Mar 29 1:48pm

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

I had a bone marrow biopsy before I got my official diagnosis of ET JAK12 positive. They were looking to make sure I had no other possible markers of mutation. Mine were all normal & I was told I would not need another.

kit491903 | @kit491903 | Mar 29 8:11am

Some commenters experienced a gradual increase of platelets. Mine shot up from 250 in July 2024 to 480 December 2024. My PC physician thought it was a lab mistake and ordered another blood test which produced the same results, so I am now diagnosed with JAK 2 induced ET and was prescribed 500mg hydroxyurea 3x per week.

My question is regarding bone marrow biopsy baseline evaluation. I am wondering if others have had this test. I am going to message my doctor if this should be done and since I have not started the drug yet, this would be the time to do it.

I am 76, active, healthy diet and no complaints. I too was shocked to discover that I have cancer by researching Hydroxyurea and discovering that it is chemo and wondering why the doctor is putting me on chemo. In another website on ET a patient was highlighted with a headline stating her dismay that she had blood cancer. So now I know ! I am in the works for another opinion at Mayo, but expect the same recommendation.

Thanks for participating in this forum. It helps to know 1st hand what others are experiencing.

Have a great weekend

ksyren | @ksyren | Feb 12 10:28am

I would love to hear more about achy bones. I'm trying to figure out if it's the ET (JAK2+) or if it's the Hydroxyurea. I had some toe and foot issues that no one was able to diagnose (4 doctors!) after my ET diagnosis but before I started the HU. Started the Hydrea Christmas week 2024 and just this past 2 weeks or so the discomfort has really been ramping up. Any insights would be greatly appreciated.

nypara66 | @nypara66 | Feb 11 7:21am

In reply to @williamsjen "Thank for your response, it was very helpful. I did not take the 1000 told the..." + (show)

I know it’s a shocking diagnosis but keeping up with your labs will dictate how much meds you need. There’s no reason to actually go into office that often unless you are having physical issues that need to be seen in person. I have PV, diagnosed tow years ago and see my doctor every six months. Labs every month and we communicate through My Chart or telephone. Also this keeps my cost down being my ins sucks. Hang in there. Things will level out. It took about 7 months to get my dosage correct.

janemc | @janemc | Feb 11 7:06am

In reply to @williamsjen "Thank for your response, it was very helpful. I did not take the 1000 told the..." + (show)

I'll bet that every one of us on this forum has felt frustration with our medical "care."

We get a weird diagnosis, for a kind of cancer we didn't even know was possible. We're left stressed and bewildered.

Taking HU and having regular blood counts is the right course of action. But I do hope that you can also find a doctor who will answer your questions.

In the meantime, please remember that on this forum, you have friends who know what you're going through.

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