1. < Blood Cancers & Disorders

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

Posted by eddb @eddb, Oct 1, 2023

I was diagnosed with having a blood cancer that looks and acts a lot like Polycythemia Vera (PV) about 6 years ago. I’ve been rolling along ok with (mostly monthly) phlebotomies, until a year or so ago. At that point my white blood cells and (most importantly) my platelet levels started to increase. The doc did a 2nd bone marrow extraction but I STILL tested negative for PV. After a CT scan and other tests were done to rule out any possible hidden bodily infections, my doc prescribed Hydrea 500 MG. I filled the script about a week and a half ago…and it is still sitting in a bag on my counter, unopened. I got seriously freaked out when I researched the drug and found all those nasty side effects associated with the drug.

Now, I’m sitting here knowing that my platelet count as of 3 days ago was 987 (over twice the normal level limit) and that I could throw a blood clot at anytime. I was holding off taking the drug, to get an appointment with a hematologist/oncologist for a 2nd opinion, but that appointment isn’t for another 10 days - I’m a nervous wreck! I do not want to take the chance with hydrea but I don’t want to clot. I don’t even have a real diagnosis other than suspicion of bone marrow cancer or the beginning stages of it….

I’d be curious to hear about what others have experienced while on this drug. Much appreciated!

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ontheverge | @ontheverge | Mar 3, 2024
In reply to @nypara66 "Hello, my oncologist is happy with my platelets at 600 or below. I’ve been sticking around..." + (show)
@nypara66

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!

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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.

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1 reply
nypara66 | @nypara66 | Mar 2, 2024

I also read the pamphlet and freaked out but did my research. This drug has been approved since the 1960’s! When I was taking it 7 days a week, my gums were tender, teeth hurt, I had some hair shedding and small brown spots on my skin. I also could feel my skin burning when outside even if it was in the 60’s. Spoke to the oncologist and he said that it will take time for my body to adjust. Within a few months my dosage was lowered to 5X a week and then just 3X a month after 7 months. My symptoms have all disappeared. I went to the dermatologist and he explained that this medication brings up old sun damage and that it’s important to avoid direct sunlight. My platelets were at 800 in the begining and now I’ve been steady for several months 450ish. I am JAK2 + and have PV labs every 5 weeks and phlebotomies started weekly and now about every ten weeks. I’m 13 months since diagnosis. Take the pills. A stroke is very likely if you don’t. You will be closely monitored and once your numbers go down, you’ll feel sooo much better. It’s ok to be scared. I think deep down, we all are.

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nypara66 | @nypara66 | Mar 2, 2024
In reply to @preacherswife1977 "Hematologist is satisfied with mine in the 400's. last time is it was 488. If he's..." + (show)
@preacherswife1977

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

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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!

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1 reply
preacherswife1977 | @preacherswife1977 | Mar 2, 2024
In reply to @nypara66 "Hello, my oncologist is happy with my platelets at 600 or below. I’ve been sticking around..." + (show)
@nypara66

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!

Jump to this post

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

REPLY
1 reply
kik1 | @kik1 | Mar 2, 2024
In reply to @preacherswife1977 "I was taking Hydrea 500 mg on MWF since August. I have had no side effects..." + (show)
@preacherswife1977

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

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Different medicine mg strengths do not need to be the same for their effectiveness. Hope everything goes smoothly for you.

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nypara66 | @nypara66 | Mar 2, 2024
In reply to @nohrt4me "A "safe" platelet count usually takes into consideration age, driver mutation, and clot history. Somebody in..." + (show)
@nohrt4me

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.

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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.

REPLY
nohrt4me | @nohrt4me | Mar 2, 2024
In reply to @nypara66 "Hello, my oncologist is happy with my platelets at 600 or below. I’ve been sticking around..." + (show)
@nypara66

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!

Jump to this post

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.

REPLY
1 reply
nypara66 | @nypara66 | Mar 2, 2024
In reply to @eileen11108 "@preacherswife1977, I have been on 500 mg Hydroxyurea since June 2022. Because of side effects like..." + (show)
@eileen11108

@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

Jump to this post

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!

REPLY
3 replies
memere09 | @memere09 | Mar 2, 2024
In reply to @debhammel "White blood cell count is 4.9 (normal range - 4.0-10.0) and red blood cell count is..." + (show)
@debhammel

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.

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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.

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debhammel | @debhammel | Mar 1, 2024
In reply to @memere09 "What are the counts for your red and white cells ? Bringing platelets down to 200..." + (show)
@memere09

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

Jump to this post

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.

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