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For An Initial Treatment Start, Did Anyone Forgo Hydroxyurea For Another Treatment Just Because They Didn't Like The Side Effects Possible.

A myMPNteam Member asked a question 💭
Wilkes Barre, PA
December 29, 2024
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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

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

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

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