Long term medication Hydroxyurea

Thank you, My doctor took me off HU for 3 days and I had to start again take it 5 days a week. Those 3 days were best days I've had in 3 years, I'm hoping this new doctor I'm seeing takes me off of it for good.

@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.

@lindy25 I take mine together right before bedtime. I wondered what the benefits would be to take one early and one late. But, I don't have any issues at night and have been taking them for 2 years.

Thank you for sharing that info.
I am taking them as I was directed by the hemotologist.
It's only been 3 weeks for me, at first I thought no side effects, but now I am feeling VERY exhausted and having some joint aches and pains.
Hoping that some if it will level out over time.

Hello and welcome. I also have PV/JAK 2and diverticulitis. I’m 78 and have been on 1000 mg of HU daily for over 5 years. I take both capsules at night before bed as was suggested by my hematologist and that works out well for me.
I don’t have family but when I told my best friend it was rather a “Ho hum” reaction. That surprised me and made me feel bad but I got over it. There is not a lot of “press” for this condition and maybe that’s a good thing. But,I think the medical profession, in general, needs more info about it. My GP seemed panicked when he told me I needed to find a hematologist asap and wondered out loud if my moving to Arizona, and the heat, caused it!
While I don’t think it caused it, after reading as much as I have about it and reading some of the comments on this forum, I am convinced that heat aggravates it.
I’ve never been too bothered by the diverticulitis but I do “blame” a lot of my symptoms on age as much as I feel the PV and HU are the cause.

@nohrt4me Since FDA approval today actually, it will be easier to get assistance since all the trials are over for ET. There are lots of programs out there to help financially and even though hematologists prescribe HU as first line, MPN specialists generally do not unless counts need to come down quickly.

@sanlee7
Yes, to the dry mouth, and tiredness. I also have anemia because the Hydrea does affect and lower your red and white cells. Also itchy skin. I also had pretty bad heart burn right away but my hematologist that first diagnosed me put me on an acid reducer twice a day and now I am on one that I only have to take once a day. But as I have said, I have been on Hydrea for 11 years and 4 months now and it has been very effective in keeping my platelets down to a manageble count but seldom under 450,000. I have had minimal side effects and no more blood clots after the first one found at the time of diagnosis, for which I had to be on Warfarin for over a year. I am grateful for that. Oh, I am 76 years old so I was diagnosed at the age of 65.

@williamsjen
Not sure about benefits but the first hematologist that diagnosed me directed me to take the Hydrea one capsule in the morning and one at bedtime. I think it does help to take them separately. I have been on the Hydrea for 11 + years.

@eileen11108 I am 78 and diagnosed with PV 6 yrs ago. Been in HU for a yr along with phlebs as needed . I just started Besremi and will be slowly going off HU. Yes, a lot of scary side effects are possible. Just like HU did, but I have been fine on it. Besremi is a drug designed to reduce the JAK 2 burden so I decided to try it. Time will tell if it is the right choice. The good news is you do a painless injection once every two weeks. That’s it.

Christina, thanks for mentioning diverticulitis! I'm 76 and find tomatoes are not my friends anymore. Finding rice and stir fry seem most compatible with the digestive system. On HU 500 daily four years now.