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

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

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!

Hematologist is satisfied with mine in the 400's. last time is it was 488. If he's good I'm good. Just started taking the agrelide today. Will see how that works. Some days I feel like it is a guessing game

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!

I am almost 72, with JAK2 diagnosed a year ago, no history of thrombosis. My hematologist/oncologist says to continue HU 500mg 3X weekly as long as my platelets (currently 587) stay below 600.

I'm glad you're experiencing minimal side effects. I no longer have the severe headaches that came with daily HU. Brain fog and lack of energy persist but that could be from ET itself or the stress of caring for a 97-year-old parent with advanced dementia.

It actually is a guessing game lol Once your platelets stay where they like them, we can only hope they stay steady! Is that medication instead of Hydroxyurea? I hear that works well but can possibly have more serious side effects. Also, is it very expensive? I’m so grateful that Hydroxyurea is only $8 for 30 pills. Between the labs and phlebotomies, I reach my deductible pretty quickly and don’t have prescription coverage. I hope you do well and get good results, Good luck!

When I got the results from my annual Medicare checkup last year my platelet count was 900k. By the time I saw an oncologist a month later it was 1.2 million. They put me on hydrea right away. I haven’t noticed any obvious side effects except for itching, although I thought that was a symptom of ET and PV as I had it before I started the drug. I can’t comment on thinning hair and dry skin either. I’m 69, and I’ve had those issues years before I started taking Hydrea.
I’ve been in this forum since then and what I’ve learned is active people have the best outcomes. I’ve got several landscaping projects going and we’re building a cabin; also things that were going before this diagnosis. It all takes longer because I take a lot of breaks, but it seems to me at least part of it is that I’m 69 years old.

My platelet count bounced around a lot for about six months before we hit the right dose and now my platelets are now consistently in the 300k range. I tap the capsules into the cap of the bottle and then right into my weekly pill holder. And daily from there right into my mouth. I do take a sip of water before I take the pills, with more water, just to get them down quickly. I never have to touch them. I feel as good as I think I possibly could at this point in my life, which is pretty good! Although I think about my blood cancer every day when I take my pills I don’t dwell on it. I treat every day the same as I did before my diagnosis, a blessing.
Like you I was freaked out by the listed side effects. Although they sound horrible, they seem to be rare. I’m way more concerned about the blood clot than the side effects. You got this.