← Return to Long term medication Hydroxyurea

Discussion
lindy25 avatar

Long term medication Hydroxyurea

Blood Cancers & Disorders | Last Active: 6 hours ago | Replies (92)

Comment receiving replies
Profile picture for janrossi @janrossi

As I said here previously, I’m 73 and have had ET (no JAK2 or anything else I’m aware of) since 1995 when a standard annual blood test showed my platelets at 1.3 M so I was referred to hematologist/oncologist. I was informed about HU but initially opted to hold off while considering and got a 2nd opinion.

Within a year I started 500 mg HU daily. Dosage continued, keeping my platelets around 400, checking quarterly, until about 18 mos ago when doc tweaked it a bit and settled on 500 mg 4 days/wk and 1000 mg 3 days/wk. I’ve never experienced anything I’d consider a side effect altho I’ve had occasional small bruises appear and both Basel cell and squamous cell spots removed. Who knows tho if any of that’s related to ET, HU or just age (isn’t everything?).

I didn’t realize until recently that ET was technically cancer but, be that as it may, I feel it has certainly been manageable and hasn’t interfered with my activities so I consider myself fortunate. For those of you who may be concerned about long term consequences of HU, I just wanted to share that I haven’t encountered any negative effects from 30+ yrs of usage while it has controlled my platelets so I hope you have the same experience.

Jump to this post


Replies to "As I said here previously, I’m 73 and have had ET (no JAK2 or anything else..."

@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.