Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
December 29, 2024
 · 
Reactions

Answer Summary

Members shared mixed experiences with hydroxyurea as an initial treatment for myeloproliferative neoplasms, with several describing severe... Read more

Members shared mixed experiences with hydroxyurea as an initial treatment for myeloproliferative neoplasms, with several describing severe side effects like illness, hospitalization, and skin ulcers that led them to switch to alternatives like Jakafi, Pegasys, or Besremi with better results. Many community members described the importance of advocating for themselves with their doctors, seeking second opinions from MPN specialists, and weighing personal factors like family history, risk tolerance, and quality of life when choosing between cytoreductive drugs, phlebotomy, and aspirin-only approaches. A recurring theme was that everyone responds differently to treatment, insurance often favors cheaper options like hydroxyurea regardless of individual needs, and patients must actively research and participate in their care because most general hematologists lack deep MPN expertise.

A myMPNteam Member

As in prior response I due not take hydroxy or other chemo due to concern with side effects and because platelets have remained below 700 (last test 607) for the last 2 years and because I dont really have conerning symptoms. Brian

December 30, 2024
A myMPNteam Member

I waited about 6 months after PMF diagnosis before I started 600 mgs/day of hydroyurea (Droxia formulation). First, I was started by my hematologist on daily alternating doses of 1000mgs & 500 mgs. I tried that for a month and didn't like how I felt when I took the 1000mg dose, so I started 600 mgs daily, and have been on it for over 6yrs, without significant side effects. I think it has lowered my platelets from about 800 to about 400; and I think it has kept my spleen from enlarging.

December 29, 2024
A myMPNteam Member

I was offered Pegasys when I advocated for an aggressive treatment route. I believe it was a good route, albeit slow

December 29, 2024
A myMPNteam Member

There are two first-line treatment options for ET, hydroxyurea and Pegasys. Both are recognized by the NCCN guidelines are preferred treatment options. Both are used off-label for ET. HU cost = $25/month. PEG cost = $4,200/month. No surprise which option insurance companies prefer. Besremi and Jakafi are also used off label for ET, but are even more expensive.

I was refractory to and intolerant of HU. I did much better on the interferons to treat PV with thrombocytosis. PLT dropped from the 700s to the 400s in 8 weeks at a low dose of 45mcg/week. We are all different in how we respond. My response does not predict yours.

Suggest you do your research and compare Pegasys, hydroxyurea, and aspirin-only. Consider your treatment goals, risk tolerance, and treatment preferences. AFter review, get a second opinion from a MPN Specialist even if you have a current hematologist. Whatever you decide, be confident in your decision and move forward to make it work for you.

Wishing you success moving forward.

December 29, 2024
A myMPNteam Member

My doc did not give me another choice took less then a month , became extremely ill was hospitalized , he stopped it I got better he wanted me to retry , I went for a second opinion and started taking jakafi which has been like a miracle drug😊

December 29, 2024

Related Questions

View All
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.
Already a member? Log In