My Hema said I could do it in their office. I’ve heard it can cause iron deficiency, anemia, loss of nutrients.

But it’s gotta be less toxic than an Rx, right? Seems all options have pros and cons? Some better and worse than others.
Thought this could be a good place to start for if and when I’m told baby aspirin isn’t enough.

New to all this mess and just started baby aspirin Jan. 31 but don’t even want to be on that.
🤷🏻‍♀️

Hi, I am 61 years old, just been diagnosed with ET and also JAK2- I have a platelet count of around 600. I am in very good health with no underlying conditions. I don’t want to be irresponsible but do not want to rush into taking Hydroxycarbomide. My age is the only thing pushing me into the high risk bracket. Has anyone else opted not to take this drug.

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'm on pegasys 135 since December and after an initial drop, my counts are back to their initial levels
Despite my mpn consultant, which is abroad, told my hemae to just wait at leat 6 months to see how it goes, my docs here (I live in a different country) are rushing to conclude the treatment is not effective, and don't want to wait as told them
They are thinking to escalate to 180 for the next two months, and if nothing happens, drop it and then they said that based on current research… read more

I'm 58 with ET JAK2 and my platelet count is in the low to mid 600s. I'm considering starting Pegasys or Besremi (clinical trial) early rather than wait until I reach 60. I don't think I would mind physical side effects, but I would be less tolerant of mood changes. Have either Pegasys or Besremi affected your mood? Or did you have any other side effects that required you to stop taking them? Thanks for sharing.

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 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 💓