Rux on NHS UK

[artydutch]

Hi All

I am due to start Ruxolinitib soon. However my haematologist is unsure if I can get this on the NHS.

I am intermediate 1 according to DIPPS plus. I have occasionally blood tests showing below 100 platelets which has not been used in the scoring of points. You have to be intermediate 2 or high risk to qualify. Has anyone got this for intermediate 1? I am keen to start now it looks that it extends life. Any details of experiences of applying for Rux successfully or unsuccessfully in the UK would be useful to know. Thank you.

[MCW22]

I've been on rux for about 4 years for my pv. My consultant just swapped me over from hydroxy one day to rux the next. I didn't have to apply for it. I just accepted what he said. Still have high white count but everything else is now in range.

[Keevah]

Hi artydutch

I am in UK (Primary MF Calr) and I had to wait until I was Int 2 before I could get Rux on the NHS. It really has made a difference though platelets good, only downside is drop in red blood count, had to have a couple of transfusions and now on epo injections, red blood is getting better.

You might be able to persuade your consultant to get you to Int 2, there are a couple of different risk scoring methods.

All the best

Paul

[Scaredy_cat]

It isn't too difficult to change you to dipps 2. You are over 65 and if you read the dipps scoring system you can probably find a blood measure or symptom that will up your score. I found it weird that when my platelets went down by only about 10, I was suddenly eligible. When they went up again it was OK because I'd already qualified.

[artydutch]

thank you all for commenting. I was told that if I start privately and cannot continue the premium as retired, I would have to give up Rux as the NHS would not allow me to continue. Hence I would prefer to start on the NHS as already struggling to finance my private insurance now. I seems I have a battle on my hands.