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!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

bevjg | @bevjg | Oct 14, 2023

In reply to @janetbender "I recently began daily 500 mg HU for ET. Platelet count is 1 million. My doc..." + (show)

I've had no side effects from 500mg Hydrea daily. I do get tired by afternoon but I have a lung/heart condition that caused that. A nap in the afternoon helps. I truly believe that whether you get side effects is all in your mindset. Don't read all the stuff on the internet!!

bevjg | @bevjg | Oct 14, 2023

Believe me, you don't want blood clots in your lungs. That's when I started 500mg Hydrea daily. No side effects!! And I have not had more blood clots.

lambo1 | @lambo1 | Oct 14, 2023

In reply to @loribmt "Welcome to Connect, @lambo1 You sure jumped in with both feet having all this medical excitement..." + (show)

I am still in watch & wait with my CLL. My blood counts are high but I don’t have much for other symptoms so I just keep my fingers crossed. I dread (like everybody) the thought of needing treatment but the advances in just the five years since my diagnosis has been amazing.

Lori, Volunteer Mentor | @loribmt | Oct 14, 2023

In reply to @lambo1 "I am still in watch & wait with my CLL. My blood counts are high but..." + (show)

Hi @lambo1, Some of the newer treatments for CLL are amazing. A younger father my neighbor hood, in his late 30s has CLL. He started a targeted therapy a couple of years ago and just completed a marathon race last weekend!
So the advances in medicine certainly offer hope to so many of us with blood cancers! But you’re right, fingers crossed that you won’t ever need it at all.

It happens! You might be encouraged by this news from @gardeningjunkie with her remission from CLL with no treatment.
~CLL, Spontaneous Regression
https://connect.mayoclinic.org/discussion/cll-spontaneous-regression/

How frequently do you have followup blood work?

lambo1 | @lambo1 | Oct 14, 2023

In reply to @loribmt "Hi @lambo1, Some of the newer treatments for CLL are amazing. A younger father my neighbor..." + (show)

Thanks for the link to the individual who experienced spontaneous regression. Very interesting, indeed. I get my blood work done every three months and see my hematologist every six. She said this frequency is because I have the two blood cancers, otherwise blood work every six would be okay since I am stable. Where are you at in all this?

Lori, Volunteer Mentor | @loribmt | Oct 14, 2023

In reply to @lambo1 "Thanks for the link to the individual who experienced spontaneous regression. Very interesting, indeed. I get..." + (show)

My delightful flavor of blood cancer was Acute Myeloid Leukemia (AML). Came on like a freight train out of nowhere. Within 3 weeks I went from symptomless to one day left on the planet. That was crazy. Anyway intensive chemo and a bone marrow transplant 4 + years ago I am back to feeling ‘fabulous dahling’ as thought nothing ever happened.
So I’m here to help others over their worst fears because it doesn’t matter what statistics say, we don’t have to become one! ☺️

lambo1 | @lambo1 | Oct 14, 2023

In reply to @loribmt "My delightful flavor of blood cancer was Acute Myeloid Leukemia (AML). Came on like a freight..." + (show)

It sounds like you really had a rough ride but what a great outcome. And hats off for your commitment to be such a support to others. Fear is such a big part of having blood cancer and connecting with others can be so helpful.

eileen11108 | @eileen11108 | Oct 15, 2023

In reply to @jonisuealan "I’ve been on 1500 mg of hydrea daily for over 3 decades with minimal side effects..." + (show)

You could try Anagrelide. It reduces platelets. If it is iexpensive on your insurance check Goodrx.com. You can get it fir about $48.00 a month at pharmacies. My doctor even has flyers on this at his office. When you check for price click down to see price at different locations, Then print the coupon.
Best wishes, Eileen

cblowers1 | @cblowers1 | Oct 15, 2023

In reply to @lambo1 "I have been on Hydroxyurea for 5.5 years with virtually no side effects (other than my..." + (show)

Interesting to me that your hair has gotten curly on hydrea. My hair, which has always been very straight, has gotten wavy and curly in the last couple of years. I am in my 70s. I have taken 1000mg hydrea daily since September of 2019 and suspected that was the cause of the change, but had never read of it being a side effect or of anyone having this happen!

lambo1 | @lambo1 | Oct 15, 2023

In reply to @cblowers1 "Interesting to me that your hair has gotten curly on hydrea. My hair, which has always..." + (show)

I have never seen this any written formally as a potential side effect, but a couple of people on another chat group I am part of have mentioned it. My hair was always a bit curly, but now it is super curly and it looks better than it every has. Much better than the side effect of thinning hair! So there is no evidence this is because of they hydrea but I can’t think of any other reason.

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