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Anyone else find the side effects of Hydrea 500MG frightening?
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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30 years. We were also very close. Thank you for sharing. I guess that is life and you are right my husband too fought the good fight. I do believe they are in a Better place. Peace st last.
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3 ReactionsI just started the hydrox med and ended up in the ER. Has anyone had issues with their legs and terms of aching and inability to walk after taking this medicine?
Hola, buen día. Lamento lo que te sucedió.
Nunca había escuchado que eso podría suceder por la hidroxiurea.
Yo llevo tomando hace 11 años.
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2 ReactionsI have heard from other patients that their legs ached bad enough to go to the ER or call the doc if they were started on too high a dose. When the dose was lowered, leg aching went away. What's too high a dose? Depends on the individual.
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2 ReactionsThank you so very much. I was scared to death.
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1 ReactionI take 500 mg of hyroxyurea 5 days a week, and 1000 mg of hydroxyurea on Monday and Friday. My legs do ache due to the hydroyurea. The one thing that makes my leg pain go away is me riding the exercise bike we have. All I can figure out is that hydroxyurea has a tendency to settle in places and stay in those places and cause pain. Once the blood starts flowing again, due to exercising using the exercise bike, the pain in my legs goes away. Drinking a lot of water is a bit of help to keep things moving but the exercise bike really creates good blood flow and the aching goes away for the entire day and evening.
I do hope as time goes by, your pain goes away or lessons.
It is best to take hydroxyurea before bed, for me anyway, so that I am not clumsy and bumping into walls during the day.
It is the weirdest medication I have taken. Wishing you well.
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3 ReactionsThank you so very much for your response. I will definitely try the stationary bike at the gym. I stopped going once I got pain one quick question are your numbers going down? Is the medication helping you?
Yes, when I first saw the hematologist my blood platelet count was over 1 million. My platelet count went down to 450 thanks to hydroxyurea but the count climbed to 540 so my hematologist increased the dose by two extra tablets a week. I do not have to see the hematologist frequently, but I do have an appointment with her next week.
That leg pain hurts big time. I will see if there is another way one can do some type of exercise at home that would not require a visit to the gym, and I will let you know.
When I was pregnant with our son, I had Bell's Palsy. No symptoms from Bell's Palsy for 40 years until I started taking hydroxyurea. Two sharp "stick in the eye" pains attacked my eye when I was sleeping. I do believe there was clotting near my eye and hydroxyurea was breaking up the clot. Never had any symptoms from Bell's Palsy until hydroxyurea.
My brother and I share the same gene that causes essential thrombocytosis. He had to switch from hydroxyurea to another blood-platelet lowering medication due to hydroxyurea being too hard for him to handle.
Getting the blood in the legs to flow seems to be the key for my leg pain. I hope it works for you too.
Hi:
I just saw this. I have PV and take 500 mg. per day. I take it at bedtime with a cracker or something (snack) so it's not on an empty stomach. I'm only 2 weeks in, but so far/so good.
I would tell anyone who has mouth ulcers to take Lactobacillus Acidophilus (4 capsules/WITH MILK). Do this at least once per day. Conversely, if you have ulcers, take 4 of these 3X per day with milk. You will have relief within 24 hours, and they will disappear in a few days.
I am doing this now, so I want to see if I can head off the onslaught of mouth sores, or at the very least, get fewer.
Good luck.
Hi @lschmeit How did this conversation fall through the cracks! I have eyes like a hawk and failed to see your reference that you had a stem cell transplant in March of this year? Or February?
Well, I’ll add you to our list of SCT members! It would be great if you’d like to share your story in either of these two discussions with our growing BMT support group.
Snapshots of hope:Life on the other side of transplant! https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
How were your early days of transplant? Have you had any gvhd issues?