I have Polycythemia my hemotology Dr is tyrying to get me off the Hydroyurea . She says it has long term bad side effects like liver damage, I am on this for 4
years now, 1000mg to 500mg, any one on this hu for a long time, I cant get past 500mg a day without getting real sick
Hydroxyurea - has anyone taken this for a long time?
- Asked
- 26 Sep 2012 by acbd2468
- Active
- 5 Jan 2013
- Topics
- polycythemia, hydroxyurea, side effect, liver
Details:
Responses (3)
aramanarao
3 Oct 2012
I also have PV and I have been on Hydroxy Urea for over a year. The only alternative 'treatment' to PV is Th-phlebotomy, which has to be done everytime your hemetocrit levels go beyond 50. Between the two, I find taking Hydroxy Urea more convenient. Also, if you are monitoring your hemetocrit level every month, you Dr will sooner than later take you off
HU or at least phase it out. No one has studied the long-term (over 20 years) effects of using HU because the drug has been in use for only about 5years now !! The fear your Dr has is based on the method by which HU acts in bringing down Hemetocrit levels, putting pressure on the liver, kidneys and bladder/spleen.
lesetton
2 Jan 2013
I was diagnosed with PV over 30 years ago, I am now 55. I have been taking Hydroxyurea (1000 mg) in conjunction with phlebotomies for the majority of that time. I tried to take interfuron a while back but that was brutal. The phlebotomies no longer work, so my hemetologist stepped up the dose to (1500 mg). I need to take this dose to keep my spleen size in check. I am having several side effects now including mouth sores, rashes, and fatigue.
To answer your question, I think being on this medication has helped slow down the stages of PV. I am now looking at switching to JakaFi prior to having a bone marrow stem cell transplant.
bluesoundview
5 Jan 2013
I have taken Hydroxyurea (500 mgs 2 times a day) for over six years. I have PV and a high platelet count, so phlebotomies alone do not work on the platelets. Last year my toes on one foot turned a mottled color. Dr. did a biopsy (neg) that turned into an ulcer. Research showed rarely some people have hand or face rashes or foot ulcer problems related to HU. My ulcer was not caused by HU but worried about the healing (went to wound specialist). Stopped HU and switched to Anaegrelide which actually did a better job on the platelet count. However, it made me feel somewhat nauseous all the time and I was afraid to eat away from home and be away from bathroom as my digestion system was so out of whack. When the foot healed, I chose to go back on Hydroxyurea. I have no other side affects with HU. I don't like it, but the quality of my life (feeling good) is more important than feeling sick all day.
Further Information
- Hydroxyurea Information for Consumers
- Hydroxyurea Information for Healthcare Professionals (includes dosage details)
- Side Effects of Hydroxyurea (detailed)
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My 85 yr father was put on 1000 mg /day to help arrest his blood counts which we were told was making his organs enlarge. He presented with chest pain and the HU has managed that problem well.
The bad news is it has almost killed him in the process we had to take him off of it after a month as his cognitive skills were vanishing before our eyes and he lost a lot of weight.
I wonder if the dosage was too much for his age and weight of 145 lbs?
Given your father's age and weight, 1g of HU is unusually high. Also, it is very important to not only check hemetocrit (aka Packed Cell Volume) levels but also the platelet count. If the platelet count drops below 150K, HU is discontinued immediately. The other observations like senility, etc have more to do with his advancing age rather than side effects of HU.