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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janemc | @janemc | Jan 7 6:25am
In reply to @stickball1 "Perhaps so. It appears to be too coincidental that my platelet count went out of control..." + (show)
@stickball1

Perhaps so. It appears to be too coincidental that my platelet count went out of control almost immediately after surgery. Two routine blood tests taken about 2 to 4 months prior to surgery were normal. 4 blood tests taken the day of surgery and 4 blood tests taken one to two days post surgery were normal.
Six days post surgery, my platelet count was 652 and kept increasing from that point on. Unlikely? Impossible? How about highly probable!!
I can’t be the only person out there that has exhibited this problem as a post surgical event.
JAK-2 is not rested for in donated blood because of its rarity. Draw your own conclusions.

Jump to this post

Most of us won't ever learn the cause of our ET. For me, the platelet count started going up after months of immense stress and physical exhaustion, as I provided care to a friend stricken with ALS. Was that enough trauma to jumpstart my MPL mutation?

Others feel their work with toxic chemicals, or military service around burn pits, may have been the trigger.

And some have a family legacy of MPNs.

Lots of questions, not many answers.

Let's keep telling our stories so that someone, sometime will unravel the mystery of MPNs.

REPLY
John R A | @johnra | Jan 8 5:14am

I have been taking Hydrea for almost 5 years. 500 mg/day and 1000 mg/day Monday thru Thursday. I have CEL.
This dosage has been pretty effective in controlling my eosinophils. I have not experienced any serious or strange side effects from this medication. Except for bruising. Everybody asks me what have you done to your arms. Otherwise Hydrea hasn't been much of a [problem.

REPLY
jello13577 | @jello13577 | Feb 9 2:37pm

I have been on this terrible .education for one year. It started one everyday then down to three a week and now one a week. It was all because I could not handle the side effects. This med destroyed me, I feel like I have the flu constantly and pain throughout my body that is actually cripplingly me. I have bad knees but this med has excerbated every pain I have. I am totally depressed and cry constantly, I have always been an active person and now more. My Dr and his PA are heartless with no compassion. I am pretty knowledgeable with medical and have researched this med and have found a lot of people cannot tolerate this med. My Dr wants no one to second guess him with his god complex and tells me I will be on this med for life. I have made an appt with another oncologist for a second opinion given to me by my PCP. My kidneys Dr told me to just go off of it until I see the other DR. All my other Drs say hydroxy is a harsh med and none of them care for it. My platelets every now and then come up normal and then the majority of the time they hover around high 400-low 600. I never was given a none marrow test only labs. I have always taken a baby aspirin for about 20 yrs and now I drink green tea and red 100% grape juice to keep my blood thin and lower platelets naturally until I see the new Dr in March. I pray this new Dr is more thorough and does the right thing. Good luck on your decision regarding the hydroxyurea, you may have good luck and have no side effects. A pharmacist told me no matter what dose we are on high or low the side effects never leave like other meds because hydroxy is constantly turning over the cells being it is a chemo med and when you come off of it it takes real long to come out of the body permanently. Take care. Janet

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