Long term medication Hydroxyurea

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.

@janemc I need help I'm very sick

@eileen11108

You're dealing with a lot, eileen11108.

Just wanted to comment that unfortunately headaches are often part of ET itself. Our platelet-heavy blood kinda stalls in the tiny blood vessels in our heads. Even a little extra pressure there means discomfort.

ET also increases chronic inflammation in our bodies, which isn't delightful for those of us with arthritis.

We each experience ET differently. In my case, I wake up with a blinding headache that eases after I've taken my morning doses of aspirin and HU. And as I start walking dogs and tackling chores, I feel less constrained by my arthritis.

Fingers crossed you and your doctors can find a way to relieve your headaches. Being in pain all the time is tough.

@sanlee7 I've bn taking HU for 3 years, one tablet a day 5 days a week. Not bringing down platelets. I sleep a lot during the day. No energy. Have sharp pains in my head. I drink a lot of water because my mouth is dry also.

@1995victoria my doctor has me taking one HU a day 5 days a week. I'm with you I don't like taking a toxic pill. I also have headaches, nausea and no energy. I sleep a lot during day, which is not good. Bn taking for 3 years. My platelets are still high. I think doctor will change my meds but all have bad side effects.

I've been on HU 2 caps (1,000mg) once a day, for 6 1/2 years. I suffered with bone pain for 3 years before I was diagnosed, so I know pain is not HU, it's ET

@debhammel
Glad to read that you are taking less HU ! ITS A CANCER DRUG THAT HAS BEEN AROUND FOR A LONG TIME ! It is cheap , my opinion is that is why most patients who have MPN AND OTHER SIMILAR ILLNESSES ARE PRESCRIBED BY THE DOCS ! I was on it ALSO FOR OVER A YEAR BUT IT FID NOT HELP ME WITH ANY SYMPTOMS! GOOD LUCK !🤩

HU has been around a long time, I think it's been used mostly for sickle cell anemia. I think ET is a fairly new blood cancer "discovery".

@hanya Hydroxyurea is prescribed because it is highly effective at lowering platelet counts for those of us with ET, and is well-tolerated by many of us. It is inexpensive because it has been in use for decades.