Today I posted my answers ,to the question are about the drug ruxolitinib .I hope this goes some way to help make this drug more available .

[Twinkly]

Iv been lucky in that I was invited to take part in the Majic trial .I agreed and after testing ,I was given the drug on the NHS. I'm treated at Cambridge ,teaching hospital .addenbrooks, my prof green ,is head of my case ,I realise now that if I lived in another area ,the possibility of getting this offer may not be available .

I started my treatment taking hYdroxycarbamide ,sadly this medication did not suit me ,we should think seriously .about the implications these facts arise,those of you in Scotland in particular .you should at least be given choice in you treatment,and medication,let me know your thoughts ,,,, Violet. X

[Armanimick]

Violet...great to hear, my hubby is on HU to help bring his platelets down but I'm wondering if I should press for Ruxolitinib which you can presently get through a charity in the UK. His Haemo says it's too early but my thinking is is it is never too early to stop fibrosis and that's supposedly what Tuxolitinib is supposed to do whereas HU simply masks core issue....let's hope NHS come to their senses, I did hear the pharma company are presenting their case again....it's all about money nothing else... I've hear it time and time again in the Uk where drugs are not available.......hope all continues to go well for you x Sylvia