I’ve just started hydrea after two years of venesections and monitoring of my PV. Bloods are now in the red zone and finally have been taking the proffered hydrea. A few days in, I am struggling with extreme tiredness and low level dizziness. Can anyone tell me if this is normal in the early weeks of taking hydrea 500mg daily?
I am a 51 year old male with PV. I was diagnosed 18 months ago and require monthly Phlebotomy. I am JAK -2 positive with an allele burden of only 1.9% but I still seem to make a lot of blood. I have a prescription for Besremi and some financial assistance and was interested in trying it but I wanted to learn from the experience of others before I decide.
If you have tried Besremi as a treatment how was it? Is it worth the cost? Were the side effects manageable?
I have been taking Besremi since Feb 2022. I was on Pegasys for about 6 months prior. I have found the interferons to be more effective and much easier to tolerate than hydroxyurea. I also had… read more
I know many people are taking this combo. Is anyone on this forum? If so, how are you doing on it? What dose of IFN & RUX are you taking? How long have you been doing it? What is your diagnosis? I'm ET JAK2+ & will be discussing this combo with my MPN specialist at my next appointment but wanted to get input from those that are currently on it. TYIA!
I was doing so great on Besremi my blood counts are great but my hematologist found out I had really high transaminases and since these enzymes were normal before starting interferon Besremi I have had to suspend it!
Really hope I can get back on it!
Let me know if this has happened to you.
Hugs Jutka 💓
I’m not on this same medication as you are so not much assistance to answering your query .
I have PV and am JAK2 positive. I was diagnosed two years ago and have been taking 1500mg Hydrea/per day for almost a year. It has been keeping by blood work and symptoms under control. I am under 60 and have concerns about staying on Hydrea long term. I just had a telemedicine appointment with a doctor at Johns Hopkins who also expressed concern about the long term use of this medication, particularly for me since I am also BRAC2 positive. We discussed two other options such as Jakafi or… read more
I was not tolerating hydroxyurea after taking it for a few years. My MPN specialist is trying to switch me to Jakafi, but we are having a hard time keeping RBCs up while getting platelets down. I am still using low doses of HU to keep platelets down, but that tack is also pushing me towards anemia
We have talked about trying interferon, but my Dr is convinced that it is extremely hard if not impossible to get the drug right now. Has anyone else experienced a problem getting your hands on… read more
I'm curious about people's use of various meds for PV, when they've transitioned to a different medication, and what they transitioned to. I'm currently on 1000 mg of Hydroxyurea and phlebotomies, am very iron deficient, and miserable (fatigue, nausea, headaches, itching, and night sweats).
I've been there myself. I look forward to the day that I can say "life is amazing again!"