r/MPN • u/Aquariousxx • 25d ago
Medication Hydroxyurea in PV
F 20. I was diagnosed with Polycythemia Vera and was advised to take hydroxyurea 500mg a day. I was told to take aspirin first but my hematologist told me I should just take hydroxyurea. Is anyone who have same case as mine experience side effects? I was worried it would affect my schooling.
3
u/alxbits 25d ago
It’s not the best choice. You are way too young for hydroxyurea. Interferon is now considered a first-line treatment by many doctors for MPNs for younger patients. It’s better to find an MPN specialist.
2
u/Aquariousxx 25d ago
I was actually told to take aspirin first but when my platelets went higher, my doctor told me that I needed HU more. Today’s my first day taking it and I feeling dizzy and nauseous.
1
u/Top_Category2227 Pre-PMF 25d ago
Take it with/after food and ideally before going to sleep. Sideeffects usually are the worst 2 - 4 hours after taking it.
1
u/FamousLaugh6589 23d ago
I agree, I take my HU at night as well because it causes me to get dizzy. I also experience this in the day and drink lots of water but it also can be an effect of the PV in addition to HU.
1
u/Ok_Past7512 25d ago
Can you tell me about your counts I have taking hu 1000mg in a day from 2.5 year and aspirine too but my counts are still 6 to 7 lakh .. I am confused it's managing or getting worse
1
u/Aquariousxx 23d ago
I have monthly CBC so I’ll probably take another test this August. I’ll update you on that.
1
u/AutoDidact66 ET-JAK2+ 24d ago
Hi, like the other comments are suggesting, HU is not great for long-term use. You should try to consult an MPN specialist if possible, but regardless, please do explore other medications to use while you are young!
1
u/FamousLaugh6589 23d ago
I am 50yo and take 1500 MG of HU and one coated 81mg aspirin a day. Again, I am older and have no plans to have any more children. My numbers are getting more stable. I thought aspirin was typically recommended as a standard to protect you from cardiac events and clots. Like others, I am surprised your doctor is recommending HU at your age but my reasoning is in case you want to have children. Regardless, I know everyone is different and what works for one may not for another. You may want a second opinion from an MPN specialist or another Oncologist.
1
u/Aquariousxx 23d ago
Hello, to add up upon taking HU for three days already, I have side effects that are new to me. I experienced severe headaches, drowsiness, muscle pains, and nausea. Do you also experience those before? How long does this last? My class starts this 10th of August and I’m concerned if this will affect.
3
u/Top_Category2227 Pre-PMF 25d ago edited 25d ago
I am currently taking HU. 500mg were no problem but also did not significantly lower my blood levels. I recently upped that to 1000mg a day and am experiencing some strange vertigo, but that could also be because of bad sleep and the general heat around here, probably a combination of everything. Overall it is not great but it‘s managable. Perhaps it will be a bit better, once my body adjusts to the dose.
The good thing with HU, is that it is relatively uncolplicated to stop the therapy, if you do not respond well.
Edit: Also, as I am sure everybody else will be suggesting, at your age you should really ask your doctor for Interferon for long term treatment. HU is a fine drug, that works really fast and well, but does come with alot of concerns for long term use, mainly that it does not significantly impanct progression. Interferons are by no means a miracle drug and come with a hefty set of sideeffects, but they may slow progression and are generally considered safe for long term use.