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.

janemc | @janemc | 1 day ago

In reply to @cetzler "@nohrt4me my daughter is a nurse who doesn’t want me to jump into anything with so..." + (show)

@cetzler

nohrt4me makes a great point.

Ask your daughter how many patients she knows with ET.

Then ask your oncologist the same question.

Please remember, you're among friends here.

You must find your own way forward, but you are not alone.

jbcl | @jbcl | 1 day ago

In reply to @cetzler "Hello, I just joined the Support Group today. I was diagnosed with ET yesterday. I tested..." + (show)

@cetzler
I know this diagnosis can be surprising and very scary. I was diagnosed at age 71 with no symptoms except a climbing platelet count.
After consulting with a hematologist/oncologist, and hearing the possibility of blood clots and stroke, he diagnosed daily baby aspirin and 500 mg hydroxyurea. I continue to feel no symptoms, but after 6 months, my platelet count has dropped into the normal range.
Do research, and read the comments on this website, which are very helpful and comforting.
Only you can decide what is right for you. May God guide you in your decision.

cetzler | @cetzler | 1 day ago

In reply to @jbcl "@cetzler I know this diagnosis can be surprising and very scary. I was diagnosed at age..." + (show)

@jbcl thanks for your compassionate reply. May I ask what your platelet count was when you started on the 500mg of Hydroxyurea ? Has your dose been lowered now that your platelet count is back in the normal range?

jbcl | @jbcl | 1 day ago

In reply to @cetzler "@jbcl thanks for your compassionate reply. May I ask what your platelet count was when you..." + (show)

@cetzler
My dose has not been lowered...possibly because I am 72, my doctor feels I am at greater risk.
My highest platelet numbers were 536, now they are around 230.
I know some people take the 500 mg 3 times a week, but I take it every day. I am blessed because I have had no negative side effects and many people can tolerate it well. Apparently children with sickle cell anemia take it without any issues .
Again...if I may suggest, pray about it, and do what you and your doctor feel is best.

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