Chris West
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Calling all myelofibrosis patients who have been treated with ruxolitinib (Jakavi)

Chris West
Posted by
05 Nov 2014

Please help us advise the Scottish Medicines Consortium on myelofibrosis treatment.

If you are a myelofibrosis patient who has been treated with ruxolitinib (Jakavi) we would like to hear from you.

The Scottish Medicines Consortium (SMC) are currently reviewing the new myelofibrosis medicine ruxolitinib, to see if it should be made available to NHS patients in Scotland.  The full title of their review is the use of ruxolitinib for the treatment of disease-related splenomegaly or symptoms in adult patients with primary myelofibrosis (PMF).” As they assess the medicine, they want to hear from patients with experience of using this treatment, to make sure their views are captured in the appraisal process (you don’t have to live in Scotland to share your views with us!).

The SMC have asked us to let them know what patients think of this medicine.  If you have experience of this medicine, either through taking it yourself or through a family member or friend, we’d like to hear from you.  Specifically, we’d like to know your thoughts on how ruxolitinib affected you compared to previous treatments you received:
• Did it affect your ability to continue work or education?
• Did it help the management of your symptoms, such as pain or extreme tiredness?
• Did it help to relieve psychological distress?
• Did it affect the convenience of how and where the treatment was received?
• Did it affect your ability to self-care or maintain independence?

If you would like your views to be heard in our submission to the SMC, please email me, (Chris West, Head of Media and Public Affairs), on with your thoughts on these questions, plus any other feedback you think we should include, by Tuesday 11th November.

Last time we asked for patients' help in advising the SMC, they changed their decision to provide brentuximab to Hodgkin lymphoma patients. Your feedback really can make a difference and help the SMC make wise decisions that will benefit patients. 



I have problems with my red blood, white blood and platelets.. I'm high risk with myelofibrosis.I started taking Jakavi Ruxolitinib in November 2012. I take 20mg. every 12 hrs. (twice a day) I have been taking 20mg twice a day for 2 years now. My night sweats are gone, my severe itch is reduced to 70 percent,my severe headache are gone 50 percent.Now I feel better than before I take ruxolitinib.