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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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Hi Jacklyn. You have a great, attentive doctor and when the time is right she’ll reduce your level if necessary. The HU has been really successful in reducing the platelet level! Your WBC at 6 (6.000) is just fine. The norm for females is 4,500 to 11,000. So let her do the worrying for you. 😉
You can sleep peacefully tonight with this good news update!
Hi Lori:
My oncologist is happy with my results. My hemoglobin is 11 went up my white count is now down to 6 and my platelets 98. I was concerned about my platelets coming down however she said she isn’t. She also said all my other blood work is good. She seems surprised. I asked if I could lower the dosage but she said no keep It the same. I am afraid my white count now will go too low. lol. Anyway I go again for another blood test 2 weeks. She is keeping a close watch on me.
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1 Reactionthank you kindly for the information. That is helpful
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1 ReactionThere are also anagrelide, Pegasys, and Jakafi. Anagrelide has been around a long time, but causes heart issues for some. Peg and Jakafi are newer, it generically available, and stilloff-label for ET, so really expensive and not always covered by insurance. Peg is interferon based and MAY sometimes lead to remission, but has more side effects than HU. Jakafi inhibits the gene that causes ET, but has not turned out to he the godsend everyone thought. Other similar drugs are being tinkered with, and something may come of those. I think it's now mostly used when HU fails.
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3 ReactionsHang in there! Most patients start off with a higher dose that’s needed and they quickly adjust to what is right for you. I have PV and when taking it daily I had some issues. After about six months I’m down to 3X a week and am doing well. It takes time for your body to adjust. My platelets have been just under 500 now for a year and my doctor is fine with that. Give it some time and usually most do very well on this medication. It does its job for sure.
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4 ReactionsI am 72, have ET with JAK2, and been on Droxia for 10 years. My dosage has been increased recently to 800mg per day while my platelet count remains in the low 600s. As the Droxia increases, the anxiety does as well. The idea of chemo pills being in my system for 10 years is frightening. I have been frantically trying to find alternatives including diet; supplements; integrative medicine; etc. Yesterday my Hematologist/Oncologist mentioned two other drugs, both with bad side effects. Just when I felt I was out of hope and resources, I read your post this a.m. and feel so much better. I continue to find this site encouraging and appreciate all the comments by Lori. Thank you all for keeping the faith and sharing your experiences. It helps so much.....
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3 ReactionsAre you able to take a low dose aspirin a day?
I have been on Hydroxyurea 500 daily for one month, following month went to 5 days a week and now am on 3 days a week. It has moved from 890 platelets at the start of this year and it is now 386 as of last week. But with this reduction on platelets, it has also lowered my hemoglobin, white blood cells as well as red blood cells and my fingernails have become blackish, darker, hence the reason for reducing the dosage as shown here above.
I was diagnosed yesterday. I picked up the prescription for the dreaded Hydroxyurea 500 and was hesitant to take it. I do not want the clots and
I don’t want to wait. I have read on another blog that the side effect vary
from person to person. If I don’t try it I think I will regret it. This is the
only medication for ET for now. I took my first dose today and I’m still here.
Fear is a force that keeps you from making a move. Best wishes.
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2 ReactionsI was on hydroxyurea (Hydrea) for 7 years for Essential Thrombocythemia (aka way too many platelets) prior to my stem cell transplant 5 months ago. I felt totally normal on my daily maintenance dose and lived my life normally for those years while on the medication.
Hope you continue to do well. Lynn
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