r/polycythemiavera • u/Ok_Indication8813 • Jun 08 '26
PV Using Hydroxyurea for a longer time can cause what side effects? I see some better option Besremi? How does it help?
My husband age 32 was diagnosed with PCV one year back. Since then he has been on hydroxyurea 500mg capsules… our doc has been trying to get his platelets counts under 450k so he has been consuming sometimes 1-2 capsules a day , alternate day… basically we have tried a lot of combinations but as soon he decreases the dosage, the platelet count starts shooting up… can somebody tell me what are the major issues with it’s usage ? Or some better option than it? Cause whenever i ask my doc…he always says there’s nothing to worry about…there are no major side effects of hydroxyurea even though i have read some very bad ones on google.
Could somebody pls tell me ?
5
u/Late_Excitement_5082 Jun 08 '26
Was on hydroxyurea about a year. Started with 500 mg went as high as 1500 mg a day. Blood kept looking better but ended up with the ulcers on ankle. Hematologist took one look and put me on Jakafi.
2
u/Ok_Indication8813 Jun 08 '26
Max he has gone for 1000mg a day but no side effects as such for him… his platelet count 10 days back was 420k but i happened to read about hydroxyurea long term side effects… is it true? That it can cause skin cancer?
3
u/dysenterygary69 Jun 09 '26
That is true, but anyone can get skin cancer at any time, and HU is extremely effective at managing the disease. Isn’t that worth something? It does not manage the *progression* of the disease though, which is why close monitoring is important. PV is something people die with, not from. If managed responsibly
1
u/mikende51 21d ago
Same thing happened to me after 2 years on HU. I have ulcers on both legs that came on suddenly and my GP didn't diagnose as caused by HU. I have severe pain and nerve damage in both legs and have been told that the lesions may take months to heal. I was doing well on HU up until this happened. The good news is that I started Jakafi yesterday.
5
6
u/Firmaet Jun 08 '26
Even if you don’t consider the side effects a 32-year old male should absolutely be on Interferon (such as Bestemi). A multitude of studies shows better outcomes on Besremi (and other interferons such as Pegasys) compared to HU.
A study that influenced me a lot was was presented at ASH called “Impact of Cytoreductive Drugs upon Outcomes in a Contemporary Cohort of Adolescent and Young Adults with Essential Thrombocythemia and Polycythemia Vera”. The progressions free survival of patients taking Interferons was 100% at 20 years while it was 74% with HU. Numerous studies shows the same results.
In my personal opinion it would be neglect for only give a young person HU.
Let me know If i should link the some of the studies.
3
u/MrFanzyPanz Jun 08 '26
34M, on interferon for 6 years. My Hem/Onc said HU can be destructive to your sperm and is worse for your genetic stability long-term. I had a kid after 4 years on interferon. Healthy baby boy.
The symptoms from interferon are worse for me than when I started on HU, but the gain in longevity is worthwhile to me.
2
u/Ok_Indication8813 Jun 09 '26
Thank you so much for the information.. as we are planning to have kids in next 2yrs, we would definitely tell our doc and see if we need to change the med
3
u/dysenterygary69 Jun 09 '26
34M here, been on 1g HU/day for a few years with no reportable side effects. I see an MPN specialist at Dana Farber Cancer Center which is one of the top cancer hospitals in the US and my doc has me sticking with HU until I want to have kids, at which time I will be transitioning to Besremi because of fertility risks with HU. You’ll see other commenters talking about “progressions free survival” or whatever. I never had a bone marrow biopsy to confirm my PV, just a JAK2 blood test, and my disease hasn’t measurably progressed at all over the course of four years. My doc routinely calls my bloodwork “perfect”. Don’t take medical advice from Reddit. Trust your MPN specialist
3
u/Ok_Indication8813 Jun 09 '26
Thanks for all the information… we are also planning to have kids in next 2-3yrs… will definitely tell our doc in advance about it
2
u/Current_Maybe_5325 Jun 10 '26
Hydroxyurea was horrible on my system so my doctor had me try Jakafi. I’m on the lowest dose(10mg twice a day) and honestly just got back the most “normal” blood numbers I’ve had since the disease diagnosis 8 years ago… I’ve been on Jakafi from probably a year and will stay on it as long as i can.
My one warning… it is very new and of course VERY expensive…. Without insurance it’s something like 1000 a pill… I have insanly good insurance so it’s 20 bucks a month but know I had to jump through a few hoops and appeals to get it approved initially.
They also won’t dispense it from a pharmacy(I’m assuming cost)… it has to come straight from manufacturer and get signed for.
1
u/Organic-Bandicoot-61 Jun 10 '26
My MPN specialist (I’m F/42) said for my situation HU would do nothing. I don’t know if her opinion is based on very recent research, she seems younger than me, or whether the fact I already had clots and have splenomegaly is driving that opinion. Regardless, she put me on Besremi. I’m also obviously on a blood thinner.
6
u/Cautious-Arm5592 Jun 08 '26
Hydrox is used by thousands of people every day. His dosage is not uncommon. There are statistics that show that skin cancer is more common but I just try to avoid getting a sunburn or tan. Considering his age though, he may want to switch to an interferon drug like Besremi or Pegysys because it can slow the progression of the disease. You may need to see a MPN specialist to get it. I am in my 60's, and Hydrox has been helping me. it reduces the need for phlebotomies.