Long term medication Hydroxyurea

@hun8ln2026
Glad your doctor took you off HU for a few days, Were you taking a heavy dose of HU? In my opinion if sharp pains in your head happen again I would immediately contact my doctor again.
When I started taking HU in 2022 I had headaches and was very lightheaded. I have been taking 500 mg at different time schedules…daily, every other day, and now four days a week.. I have been off HU for three weeks, My headaches still happen but not quite as intense. I am about to start again at four days a week.
Best wishes, Eileen

I started taking HU 3 years ago 500 mg 3 days a week, platelets were not coming down.. then 500 mg 4 days, then 500 mg 5 days and last month 500 mg 7 days that is when I started having sharp pains in my head. I am now back to 5 days a week. Pain in head is gone but I have fatigue where I don't want to get up and do anything. I do walk my dog although I have pain in my bones in my legs. I just push myself to keep going. I see my family doctor on Monday. I'm going to see another hemotologist, just for another opinion about my diagnosis and the HU.

Yeah, its hard to explain to friends and family--cause half way through--their eyes glaze over.
It's not a one-liner disease, it takes many words to explain. Then they have a blank stare and nod and say something supportive (which is great) but its clear they don't fully understand what you have. I have been on HU for about three years at 79yrs now. I am tired a lot but I'm old so, hard to blame the ET or HU. Plus I live in FL and the heat this year is brutal.

I have been taking HU for 11 years, 2 500 mg capsules daily and when my platelets crept back up to 900 + probably due to some steroid injections I was having to take for my hip and back pain, I had to take 1,500 mg three days a week and 1,000 mg one day a week. I have not had any headaches except when I forget to drink my coffee. 😉 But I am one that, thank the Lord I hardly ever get a headache. My feet, now THEY DO HURT!

I am also JAK2 ET dx last year. Considered high risk due to an arterial clot in 2023 and I’m 58F. My hematologist started me on HU and I was ok for a few weeks but noticed some neck and shoulder pain that wouldn’t go away. Then body aches and fever and chills a month in. At first I thought I was sick but I skipped a dose and was immediately better. It was truly awful and the same with anagrelide. I was eventually sent to an MPN specialist who said he would have started me on an interferon to begin with. Now I’m rocking along so my point is, HU is rough and the specialists aren’t using it anymore other than to bring counts down quickly. I would request a specialist!

@mdramsey48
Thank you for sharing your experience! I’m just 3 weeks on HU and started out with no side effects. Recently feeling pain and thinking it’s something else, so I’m going to be more alert now after reading your post.
💓

@lindy25 That’s what I thought too. I thought maybe I overdid it at the gym, then thought I was getting the flu. It is cumulative so the side effects build over time. By the time I figured out what was happening, I couldn’t move. Every day was worse than the one before. Interferons are now the go to treatment for MPNs and will be officially FDA approved the end of this month. I am taking Pegasys and will be switching to Besremi soon. It is the only thing that can reverse the burden and ease symptoms. Plus the side effects ease over time as your body adjusts.

@mdramsey48
Good to hear of the different treatments offered and tried. I have had success with the HU so far. The biggest problem I have is my foot pain and I really think that is more the disease progression than the HU. Plan to stay on it until I realize different. I know it is toxic... I wonder what isn't as far as treatments go? 🙂 I also had blood clots when first diagnosed but none found since. I was on Warfarin for about a year and since no actual blood thinners except for baby aspirin, ginger, and other natural supplements as well as the Hydrea which is supposed to keep the platelet production suppressed. going on 11 1/2 years past initial diagnosis. All this time on Hydrea. BTW, may be important to mention that I take the Hydroxyurea exactly like my first hematologist/oncologist told me to: one 500mg capsule in the AM, one at bedtime. Also, I did notice as soon as I began taking them all those years ago, I had a pretty bad heartburn reaction. He put me on an acid reducer and it has not been a problem since, (except if I eat really spicy or greasy foods). I am taking Esomeprazol at present, one capsule a day. Seems to control the heartburn effect.
But this is really good that we can listen to others experiences and encourage on another.
Thank you for taking the time to post here.

I’m so happy you are doing well. Just wanted to mention that interferons stop progression and can reverse it in some cases. I suspect that is the reason it is becoming first line treatment since it treats the disease and not just the symptoms. Additionally, our bodies naturally make interferons, which is why our bodies adjust and accept them over time. Best of luck to you!

@mdramsey48 glad I read your post, I've bn taking HU for 3 years, I'm 78, In past month my legs hurt so bad I am having a hard time walking my dog. I'm seeing a specialist in another city in September for another opinion about my ET and taking HU. My platelets are not coming down but I can't continue taking the HU.