For An Initial Treatment Start, Did Anyone Forgo Hydroxyurea For Another Treatment Just Because They Didn't Like The Side Effects Possible.
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.
I was offered Pegasys when I advocated for an aggressive treatment route. I believe it was a good route, albeit slow
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
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.
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😊
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