I have ET for last seven years, so far was only on aspirin. But recently my platelets elevated considerably and now dr. Put me on hydroxyurea ( two tablets ) daily. Can anyone guide what precautions should I take while taking this drug. I am getting lot of information online and getting paranoid.
can it cause progression to leukemia?
Can I share my glass with others,
Can I kiss my children
Etc
thanks
Hydroxyurea is an effective cytoreductive agent but is a toxic substance that does come with some risks. It is very important to ensure no one else in your household is exposed to it. If anyone else handles the medication or the bottle, they should wear gloves.
Hydroxyurea does pass into bodily fluids, including saliva. It is OK to kiss your children but I would not share a glass of water, though there is no guidance on that. You will note in the attached document that it is recommended that people on HU use a condom if they are sexually active. This is not just for birth control. HU passes into semen and vaginal secretions and the partner can be exposed, risking irritation of genital tissues.
HU is usually not recommended for people of childbearing years. This is in part because it is teratogenic and can affect fertility in men. In addition, there are risks associated with long-term use, including secondary cancers and an unquantified increased risk of leukemic progression. Pegasys is often recommended for younger people with ET.
Here is some information about HU.
drugs.com/monograph/hydroxy...
I started on aspiring when diagnosed with Et in my 30s. Went on hydroxy in my 40s when my platelets got very high. (Both specialist and I thought best not go on pegasy because of depression risk). Now in my 50s im on three tablets a day.
Yes the hydroxy is toxic, but having high platelets is very dangerous too and puts one in immediate risk of having a blood clot anywhere in body including the brain. So its a matter of choosing the lesser of two evils. Even without hydroxy your bone marrow is still working abnormally and scaring likely happening.
As far a hydroxy causing leukemia, its so rare its very unlikely to happen. More likely for hydroxy users is skin cancer.
Im a sentimentalist. I believe we should not get to obsessed about our health but should have some balance and happiness. I live in Australia where skin cancers are more common. Yet, i often forget to put sunscreen on, despite the increased risk.
I still share, still kiss. But i dont let anyone touch my meds. If you live healthy and support your body with good nutritious food you will likely live well into your 70s and 80s like most people. If hydroxy was not available, i believe life expectancy would probably be alot shorter.
The main precaution i would give: dont worry too much. Hydroxy will help. 👍
I have ET JAK2 and tried hydroxyurea. My experience was an increase in my liver count to a toxic level (83). I also itched like crazy. I had to change doctors in order to be offered alternative treatments. I've been taking Jakafi 10mg 2x day since Feb 2024. It has been working very well and my liver numbers are less alarming. It is extremely expensive but Incyte does have a program to help curve the cost. My new doctor's office assisted me in getting enrolled in the program.
Overheating at night 
Anyone else with MDS/MPN suffered compression fractures?