How fast do you start to feel hydroxyurea symptoms?

JAK2+, diagnosed Feb 2024. Counts had been elevated for 3 years, then jumped at annual physical.

Started with 500 and phlebotomies every week. Then 1,000, and phlebotomies every 2 weeks, finally 1,500 and fewer and fewer phlebotomies.

HOWEVER, at first I had a large bruise on my left inner thigh, and I could feel knots a half inch or so under the skin. Then my left ankle began to swell, then the foot too. Finally I started getting a pain in my side, severe enough to it was painful to get in and out of bed, or off the couch and out of a chair.

24 hours after stopping hydroxyurea, pain was nearly gone, and other symptoms have been subsiding. I started 15mg Jakafi 2 times a day a week later.

How is the Jakafi going?

Day 4, so far so good!

New to this group. I've been diagnosed with an MPN ET with JAK2. Doctor has put me on 500mg HU and it took me days to pop the first pill, which I did today. I'm 68, with great blood work accept platelets getting a bit higher for the last four years, last one 627. In 2016 I had a clogged artery and now a stent, no other issues. I have to say, I'm having trouble processing all this. I shook awful trying to put this pill in my mouth, but I wanted to stop being so weak hearted. The doctor said I have Jak 2 % , which he says is a low risk, and getting leukemia in the future is also rare and low risk. But I feel like very little is understood about this disorder. I read some doctors don't even consider treatment if platelets are under 750 with no symptoms. Is this right? I'm considered high risk because of my age and the Jak gene.

Your clot risk depends on age, mutation type, and previous clot history. At 68 with JAK2, you'd be intermediate risk. Add the clogged artery, which your doc may see as an added stroke/clot risk, and that may bump you into the high risk category for clots. It might be good to ask if the stent/clogs make a difference in treatment decisions.

Everyone with ET is kinda different. Just for comparison, I have ET-CALR, no history of clots. My doc let my platelets ride up to almost 800 before she started HU. I was 64 at the time (70 now).

The other risk with ET is acquired von Willebrands syndrome (AVWS), which occurs if you have a platelet count over 1,000. That can actually cause internal bleeding.

My dad also had ET. I don't know what mutation because only JAK 2 was known 20 years ago. He was not diagnosed until he developed leg clots. He also had an enlarged spleen and visual distortions. At diagnosis his platelets were over 1,000 and he had some internal bleeding. (Dad did not like to go to doctors, so the ET was probably brewing for many years.)

The ET didn't kill him, but it was not treated early. It took a few years to get his platelets down, and he had to take very large doses if HU and anagrelide together for a time.

He died at 82 of COPD.

I had few fears about taking the HU because of what Dad experienced. I started on 500 mg per day, but that only took blood levels to 600. Doc added 3 extra caps per week, and I stay in 400s now. I'm doing OK. The HU got rid of some of the fatigue and headaches.

Take care. You have many good years ahead.

I am 70 years old with ET and MPL mutation. I have been on Hydroxyurea since June of last year when my platelets were about 900. My dosage keeps being adjusted, even now, because my blood work keeps changing….i would get close to being good with platelets nearing 400, but then my white blood cells would drop so much that I would have to cut back on the Hydroxyurea. Last month my white blood cells had been stable for a couple of months but my platelets were climbing so I once again had my dosage increased to 500 mg 5 days a week and 1000 mg the other 2 days. I have just recently had another blood test but my platelets are still 657 and white cells are within the normal range. But what has me concerned now is that my Creatinine level has entered into the dangerous zone with 86 and my eGFR is 59…..both of which indicate kidney disease. I don’t see my haematologist until April, but have an appointment with my family doctor in January, so I will be asking her then if I should be concerned. I never had any issues with these prior to taking Hydroxyurea…..has anyone else experienced this side effect?

I just started taking hydrea and want have another blood draw for 2 weeks my numbers went up to 1033 because of delay in test etc. My blood count numbers weren't bad in other areas. I haven't had any side effects from the hydrea take it around 7pm every day. Will try you know after next blood draw.

It certainly wouldn't hurt to call your hematologist's office and tell them you are concerned about the creatinine and eGFR. They might have you cut back on your HU dose and/or have a re-test in a couple of weeks.

My oncologist always tells me that the nurses review all results and they will call me if they see anything concerning. But sometimes you see it before they do, and it never hurts to call and check.

Glad you are seeing your GP, too. Let us know what you find out.

@563m209, wanted to check in. Good news that your platelets are going down. How did your appointment go? Are things stablized enough to reduce the dosage of hydroxyurea again?