hi everyone I’m about to start taking jakafi due to tomorrow, any input/suggestions for pmf patient like me, with splenomegaly and portal vein thrombosis (monthly ligation since march last year), jak2+, dmm3ta+
Hope to get feedback from the community! thanks a bunch!
I love Jakafi except for the cost—very expensive in the U S. It greatly helped my terrible itching. Also it caused anemia and made me more susceptible to infection. But my itching with HU was almost unbearable.
I found that Jakafi reduced my enlarged spleen very quickly and at least temporarily eliminated some of the symptoms I had been having (they came back after 1 year). Downsides are it lowered my immune system, so I got shingles followed by an eye infection. Those things were temporary. But the permanent thing was it caused weight gain, not a lot because I was aware of the possibility and watched my diet carefully.
many people on it for MF feel much better, side effects are rare, it may lower immunity , I’ve been on it 5 years for PV and don’t notice change in immunity except shingles, if poss maybe wise to get Shingrix vaccine or if not keep box of Aciclivor or similar handy just in case of shingles, allegedly 6% of patients on Rux get shingles. If you get shingles it’s important to hit it hard and fast with Aciclivor or similar because if you do that it lessens symptoms and how long you have them, but remember 94% don’t get it , good luck.
I've been on Jakafi for about three months. I have PV and was on hydroxyurea for more than five years. I reacted badly to the doses of HU that I was taking to control platelet counts, so in the end (summer 2022) I was taking a minimal dose and having lots of phlebotomies. Jakafi did cause anemia, so my dose was cut in half (now 10 mg once daily). Things seem to be going well right now; there was some weight gain and higher systolic BP. We'll see what this week's blood count numbers say. I can confirm that it's very expensive in the US.
I asked Dr V re possible anaemia with Rux for PV before I started it ,he said which I suppose is obvious just cut the dose, there is no reason to have anaemia with Rux for PV, MF is different.
My MPN specialist told me that anemia was a known side effect of Rex, and with me that's just what happened. After a month or so on Rux (10 mg, twice a day), my hemoglobin started to drop, and when it reached 10, I started to feel significantly weaker. After the dose was cut to 10 mg once a day, HGB started to come back up again. We'll see what this week's blood count numbers say.
combo Jakafi and Pegasys
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