Anyone else find the side effects of Hydrea 500MG frightening?

I’m 57 Jak2+ with PV and no other risks factors for clotting thus far so that’s probably why he’s good at 600 or below. When taking daily doses I dropped down to about 200. He said that was too low so we did 5X a week and now just 3X. The higher doses made me have tooth pain, hair loss and headaches so I'm really hoping I can stay on this low dose. Time will tell and now that I’ve adjusted to the meds, maybe it won’t be as bad. Thanks for your response. Always good to get info on this journey we are all on together.

A "safe" platelet count usually takes into consideration age, driver mutation, and clot history.

Somebody in their 40s with CALR mutation and no clots might be allowed to ride to 1,000 with just aspirin. Somebody over 60 with JAK2 and deep vein thrombosis might be given aspirin plus enough HU to get platelets below 400.

Oncologists who deem a patient at high risk for clots, regardless of platelet count, may front load a higher dose of HU to get count down and then lower the dose when platelets are at acceptable levels. These patients might experience most drug side effects.

Oncologists who deem a patient low or moderate risk might start patients on low dose and increase over a period of months as needed.

There is really no one size fits all approach. So it's helpful to me when people include their age and mutation with comments here. (I'm 70, CALR, no clots.)

I was under the impression when I was first diagnosed that the higher my platelet count the higher my clot risk. Doc said it's more complicated. Anything over 450 increases risk. Anything over 1,000 increases bleeding/von Willebrand risk. In between, the rising or falling counts indicate whether your disease is progressing or your meds are working.

Hello, my oncologist is happy with my platelets at 600 or below. I’ve been sticking around 450 now for a few months taking Hydroxyurea 3X a week. Took about 7 months to get the dosage right. Not sure about what everyone else’s doctor says but mine assures me that up to 600 is completely safe and acceptable. Minimal
Side effects on the low dosage but had some when I was taking it daily. Keep us posted!

That’s fabulous. I had hernia surgery and in order to get my platelet count to under 500, hydroxy was increased to 1500 mg per day. That resulted in my red count being 2.7. I couldn’t get off the couch.

White blood cell count is 4.9 (normal range - 4.0-10.0) and red blood cell count is 3.58 (normal range 3.8 to 5.4). This is as of two weeks ago. RBC is a bit low but not enough to cause concern. RBC was 4.5 last November and WBC was 8.7. My next bloodwork will be mid-March, so we are carefully monitoring this.

What are the counts for your red and white cells ? Bringing platelets down to 200 from 792 seems a big jump without affecting the other blood components

I've been on HU since mid-November when I was diagnosed with Essential Thrombocytosis. Started off at 500 mg twice a day, 7 days a week and am now taking it 4 days a week. My platelets were at 792 and are now around 200. I have been fortunate that my side effects have been mild - while on the 7 day-a-week regimen I got sudden, severe headaches that lasted less than 30 seconds. This didn't happen often enough to concern me, and they stopped when my dosage regimen was changed. Given the reduction in my platelet counts, I am happy to stay on HU for the foreseeable future.

@preacherswife1977,
I have been on 500 mg Hydroxyurea since June 2022. Because of side effects like headaches, diarrhea, lightheaded, etc. I have had time off, and then taking at different timelines. Platelets have been staying around 550 but my hematologist would like me to get below 400.
My timelines have been daily, month off, every other day, three days a week, and the last four days a week. Headaches suddenly became too much so I am stopping for a month, Then I will try Anagrelide at the lowest dose twice daily. Not sure yet what the lowest dose will be as waiting to get it, If Anagrelide does not work for me the next step will be Pegasys.
Best wishes, Eileen

I was taking Hydrea 500 mg on MWF since August. I have had no side effects that got my attention. Within the last month I noticed a change in my vision. I had an appointment with my eye dr that was coming up so I waited for that which was this past Tuesday. They put the yellow drops in my eyes to take pictures since I have macular in one eye and also 1 drop to dilate my eyes. When the dr came in I was looking at the images (like I knew what I was looking at ). He looked at them and said, "Lets look at your eyes then we will talk". He said the yellow drops were immediately soaked into my right eye. I immediately got concerned. He said at first he thought it was my retina but it was not, My cornea was swollen, He asked had I changed meds since my last visit (I have to go every 6 months). I told him yes and he asked what it was. He said is your skin dry? I said yes I would love to soak in a barrel of lotion for a day. He then asked if I had any sores in my mouth? I said yes. He said the medicine is causing your cornea to swell. He gave me steroid eye drops to get the swelling down.

That afternoon I called my hematologist. He said I was having an allergic reaction. I asked why did it just start that I had not had any problems. He said it just built up in my system. He took me off of the Hydrea and replaced it with Anagrelide 1 mg twice a day.

I went to pick it up yesterday but pharmacy had to order it. I should get it today. IDK what that will do after a period of time. My question is the Hydrea was 500 MG 3 times a week which equals to 1500 MG. The new medicine is 1 MG twice a day which equals to 14 MG. Don't make much sense to me

Praying you do well

No way could your dad have understood what was being read to him. I bet I would have struggled too even though I do not have hearing loss.

Well, my hematologist kept repeating "It is not cancer" over and over again so I appreciate that.
I agree that telling patients that they have a "rare chronic bone marrow cancer that which will allow for a normal lifespan.

Thank you for your kind response.