Hi everyone

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

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  • 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

  • I've taken it for 6 months and it works very well with symptoms. I've had no side effects except slight weight gain.

    Hope it works for you.

  • Thanks Mirribell, stay well

  • I am taking it too and it has caused SLIGHT raise in blood pressure that is being medicated but not alarming. I went on Rux after 18 years of mostly HU. I now have Post ET MF and Rux is helping with some symptoms but to be honest I'm waiting for the next wonder drug to come along! I am having regular transfusions now so hopefully something else will come along. Good luck with your journey. I hope you have great success as many others have had with Rux

  • Hi Christine, sorry to hear yo have been diagnosed with PV but welcome to the forum where you will meet so many kind people who know exactly how you feel and also by asking Maz on MPN Voice you can get answers to your medical questions.

    I was diagnosed with PV in 2012 but so far have been treated by venesection but as you can see from the other replies, there is always someone else who can help with your questions. Take care, best wishes Aime xx😺

  • Hi Christine, welcome to our forum. I can't give you any personal advice on Ruxolitinib as I take Hydroxycarbamide, there are quite a few people on this forum who do take Ruxolitinib, I hope that their responses will help you. If there is anything I can do to help please email me at maz.cd@mpnvoice.org.uk. Best wishes, Maz

  • Hi Christine

    Been away on holiday in the sun since Christmas and have only just returned and had to add my praise of Rux. Been on it for MF since October 2014 and it has been a wonder drug for me. I was feeling so ill with PV, spending an awful lot of time in bed and weak as a kitten. I now have no itches, no sweats much more energy and also beginning to walk again (by that I mean walking well for exercise). It has given me such hope for the future . Of course we are all different as to how we react to drugs but Rux has truly given me my life back at the moment.

    Before I took my first Rux I sat looking out of the window and cried buckets, I was so scared. All that is history. I don't know what the future holds but as I said, I have hope.

    I do wish you well.

    Linds x

  • Thanks Linds, that helps a lot. My starting it has been held up because the hospital doesn't have a follow-up appointment for me yet, but having read and appreciated all the replies on here I feel much calmer about starting it. Obviously I'd prefer not to, but none of us asked for this so I guess we have to just make the best of it. Good luck to you Linds and everyone else out there.

    Christine x

  • Hello my name is Angela I think I am being offered the same drug,although the other name for it is JAKAFI, it's a phase 2 chemotherapy drug for people with our condition (I live in Colorado, U.S.)I am starting it in 3 to 4 weeks( getting over flu)I hope I have as good of news as patients already on this here.

    I have only heard good things about it,I will post about my experience with this then..

  • Hello Angela, good to hear from you! I'm starting mine tomorrow so can hopefully let you know how I'm getting on with it, I feel a lot more confident in starting it now so hoping the reports will be all good! Take care of yourself, hope your flu clears soon, Christine

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