Long term medication Hydroxyurea

I also have the JAK-2 mutation bn on Hydroxyurea for 3 years, having side effects, seeing another doctor on September 15th. Some people say they have no side effects from taking Hydroxyurea but I have problems. I also have diverticulosis and feel nauseous a lot of the time. I'm hoping this new doctor takes me off Hydroxyurea because I am having more side effects, fatigue, bones hurt, getting harder to walk and stand. I also have osteoporosis which may be another reason for pain in legs. Praying for you and all others that have a blood disease 🙏

@loribmt
No, my feet are still in bad shape and ache and get hot at night. I’ve been an avid tennis player my whole life, playing collegiate and competitive league play until this spring. I’m sure arthritis has something to do with this but I’ve read other posts where someone complained about tingling hot feet at night.

I was diagnosed with ET and the JAK2 mutation almost 3 years ago and have been taking HU ever since. The only side effect I had was very brief (30 seconds), intense headaches when going quickly from sitting to standing. That subsided after about a week and since then I have had zero side effects - and my platelets dropped from 792 to right around 200. I take 500 mg 2x a day, Mondays through Thursdays, and always take it with a meal.

Has anyone heard of a new biweekly shot that replaces HD meds. My doctor mention it but forgot to write it down for me to google. I will find out about it..

I am 82 and was diagnosed with ET JAK2 in 2022. I started with 500 mg daily of Hydroxyurea. I had headaches and was lightheaded. I was switched to every other day which helped. I currently take it four days a week. I am on a blood thinner for AFib so I cannot take aspirin or anything other than Tylenol. I have hypothyroidism.

My problem is daily headaches and my arthritis has gotten much worse. My hematologist told me to stop taking HU for a few weeks to see if headaches continue. They are continuing daily. She mentioned a possible medication change. I researched Pegasys and Besremi, They also have many side effects. So I am very hesitant.
Best wishes, Eileen

Thank you for sharing your experience. I have been wondering about the whole “management” versus ‘cure’ of this disorder.
I’m sorry to hear you have so much pain:( it varies so much from person to person.

@lindy25 have any of you had increased side effects the longer you take it.. or the higher the dose?

@drbart86

Thanks for providing this link.

Stark, but also validating.

@mcsulli

I have been on an increasing dose of HU for three years. I started out at one capsule a week, now take 15 capsules (7,500 mg) a week.

No increased side effects as the dosage went up. My only issues are dry skin and occasional constipation when I don't drink enough water.

HU works well for me.

71 year old female, MPL-driven ET

@janemc
I have had various dose changes, due to escalating platelet count all the way up to 8,500 mg a week. I am back down to 7,000 mg a week. I also saw no changes with higher dose. My doctor feels this is a good dose for me right now. Seems to have leveled off at about 5,000 or 5,500 platelet count.