HI, my partner was diagnosed with primary mf at the beginning of January. He was categorised as low risk. His first scan in February showed a spleen size of 23 cm. He has recently been suffering from significant localised spleen pain and acute referred pain on the point of his shoulder. He has had another scan and his spleen is now 28cm. He has been told that he can't have ruxolitinib because he doesn't meet the prescribing criteria because he is low risk. The request for the drug will have to go to an individual patient funding request panel. We live in Wales, which Im now beginning to wish we didn't and only 51% of all IPFR medication funding requests were approved last year. He hasn't been offered any pain relief apart from the cocodomol that his already taking at max dose and which isn't working at all.
I would welcome and thoughts, suggestions or comments and apologise for the long post.