Hi, I'm Christine, and this is my first time posting on the forum. I was diagnosed with MF last autumn after having PRV for the past 16 years. I've been quite lucky really as I haven't had many symptoms, so far, and I managed to get through the past 16 years without too much intervention or having to take any strong medication. Now though I've been advised to take Ruxolitinib and it's scaring the pants off me (was advised to read the leaflet thoroughly - scary read!!) and I'm wondering if anyone out there has taken this and can give me some guidance as to how their journey on it has been? Many thanks.
Best wishes to all for a healthy and happy 2016, Christine
Hi Christine, just read your post and was struck by the similarity between us. I had PRV for about the same length of time before it developed into myelofibrosis. That was back in 2006, and by 2012 I was pretty ill with enlarged spleen, blood clots, transfusions etc. The decision to put me on Ruxolitinib came in May, 2013 after a tough 18 months in and out of hospital. A bone marrow transplant was offered, but then taken back as I had kidney failure and subsequently lost an organ. Whilst Ruxolitininb was a last resort, it has been a god send for me! Yes, there are down sides, but nothing I can't handle. It's the first drug ever to be made available to people like us, and I only have good things to say about it. Then again, this is my experience, and I'm sure you would like to hear other people's views on it. Just a point....after being on hydroxy for 21 years, I found Ruxo a lot easier on my body
Hope this helps. Best wishes and have a great 2016....Jeanette
Thank you Jeanette, that's really helpful. Stay well
Hi lawhill
I read your post and It was very inspiring. You fought and continue to fight like a lion. I look for positive posts like your to give me hope and inspiration. Recently diagnosed with Ruxolitnib and hoping it works for me as well as it did for you. Are you still on it? From your post you mentioned you were diagnosed since with mf since 2006 or 2012? Either way it is truly a good story. Maybe you can give me some advise? How do you feel today? Are you able to get around etc?
Hope all I well