Hydroxycarbamide or Ruxolitinib am I right in thinking HU helps platelet levels but Ruxolitinib actually prevents fibrosis of bone marrow ?

[Armanimick]

HU or Rixolitinib ? am I right in thinking HU helps platelet levels but Ruxolitinib actually prevents or at least slows fibrosis of bone marrow ? Therefore if Ruxolitinib is prescribed wouldn't that help the core issue thereby helping platelets to normalise ? ... NHS only prescribe HU as first treatment I think but as much as hubby is on it, I want him on Ruxolitinib to stop / slow fibrosis - ? I'd love to read your views on the two so as to have better understanding

[beetle]

Hi Armanimick. If you are living in the UK and your husband has ET I don't think there will be any chance of having Ruxolitinib on prescription. It is only available for MF through the NHS for those who have been in the drug trials or else it is funded by the Cancer Care fund. I am not aware of Cancer Care funding it for anything other than MF. I have Post ET MF (after ET for 18 years) and although Ruxolitinib has controlled my platelet count the jury is very much out on its ability to stop fibrosis. Fibrosis is a symptom rather than the core issue and many are saying that the degree of fibrosis is not even prognostic. We appear to all react differently to different drugs and Ruxolitinib is not the answer for me that I had hoped. Being very expensive I think you would have an almost impossible chance of obtaining it for you husband if his diagnosis is ET

[Armanimick]

Hi Beetle, thank you. My hubby is MF but early...and yes, what works for one doesn't work for another, I'm learning that...I think I just have to have faith in the GP but keep on making sure by questioning him and asking others to make sure he's not missing out on anything....thank you for your time and I wish you the best of health going forward...my regards Sylvia

[beetle]

Hi Sylvia. I hope that you/your GP are getting advice from an MPN specialist Haematologgist. It is very rare for GPs to know much/anything about our conditions! You are certainly right to be asking questions. There is a lot of information out there now ( not like back in the dinosaur days when I was first diagnosed with ET!!) but try to look for information from recognised sources. Forums such as these are good. I am getting more and more cynical in my old age about the involvement of "big pharma" in our conditions nowadays. It is not always easy to know which "expert" is singing from which hymn sheet - but the information is usually there if you look for it. I hope your husbands journey is smooth and that he stays well for many years to come.

[Armanimick in reply to beetle]

Thank you beetle and the same to you too regarding your health.... I too am cynical as it really is all about the money...I worked in corporations where I've seen people don't really figure...in eyes of public, yes, but not on the profit and loss account....absolutely hate it so all we can do is make waves, stamp out feet, voice our opinion and question, question, question which I have no problem in doing and more so for a family member ..... Al my very best to you.....