Connect
Long term medication Hydroxyurea
Hello
I was recently diagnosed with the JAK 2 mutation. My hematologist prescribed 500 mg of Hydroxyurea 2 times a day.
I just started taking it 6 days ago. So far I haven’t had any side effects, maybe stomach upset but I also have diverticulitis so it’s hard to tell.
I’m really grateful for this support group. So many of my questions have been answered by reading through the posts.
Most of all it’s nice to find others who know what’s going on, none of my family & friends understand this.
Thank you
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
I am seeing my doctor next month, I will be asking her if she can prescribe another medication. I can not deal with HU any longer, having too many side effects.
-
Like -
Helpful -
Hug
1 ReactionI was diagnosed with ET on May 26th of this year. I take 500mg of HU and 1 mg of Folic Acid twice a day along with baby aspirin. I have stabbing bone pain in my feet and hands. My doctor says it’s neither ET nor HU. I think he’s wrong.
MPNs are “orphan diseases”, so few people have them, therefore, not much research is done to cure them, they are simply managed.
-
Like -
Helpful -
Hug
3 ReactionsThank 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.
-
Like -
Helpful -
Hug
1 Reaction@1995victoria
I think that doctors just wing it based on the response of the platelets to the HU. I started out with 500 mg of HU daily. When my platelets didn't decrease much in the first two weeks, my doc wanted to change the medication. I dug in and asked if we couldn't wait for one month to see what happened. He agreed, but increased the HU to 500mg in the morning and in the evening. The platelets dropped 10% then, and in the next month another 10%. We're hoping for another 10% this month, then platelets will be at 400. He's going to let me play around with the medication at that point. I'm a control freak and like being part of the management team.
-
Like -
Helpful -
Hug
1 ReactionMy dr told me 1,000mg right from the start, I was over a million.......I played around with HU, alternated 500 and 1,000 alternate days.....hardly moved, took the 2 caps at same time at night as he prescribed......and bingo the counts came down.....and have been down for 6 years now....
@janrossi
It is really good to hear you have been on HU for many years with no side effects. That is so encouraging. Did your white and red blood cells go down also as the platelets went down. I'm 79 and just started on HU in March 2026. I don't have any side effects either just the red blood cells going down a little. I am taking one a day for 5 days a week of the 500mg.