Ruxolitinib for Polycythemia Vera

[SirKitBored]

I am 77years old. I was diagnosed with Polycythemia Vera in Dec 2005 (JAK2+) and had symptoms including visual disturbances for about 2 years before this. I have taken Hydroxicarbimide over the years the dose increasing from 8-500mg capsules per week in 2005 to 11-500mg per week today. I see my haematologist every 2-3 months and have venesection 2 or 3 times a year. I also take a 75mg Aspirin in each day. I have all the the usual PV symptoms including tiredness, itching, enlarged spleen, and night sweats. I had a marrow biopsy earlier this year which confirmed my PV has not progressed to MF. My haematologist considers that my situation would be greatly improved with Ruxolitinib but this has been rejected through the NHS. Has anyone similar to myself managed to obtain Ruxolitinib on compassionate grounds from anywhere else including the drug company.

[MPort]

Hi,

It is very sad to read of your symptoms and high dose hydrea and especially your enlarged spleen. You may not have MF and so not be considered for Ruxolitinib easily but I think you have a good case due to need to reduce spleen size and because hydrea is obviously no longer working.

All I can offer you in my history of getting interferon in 06 when it was not in NHS system for PV. My very kind haematologis got the special forms and got the NICE (she who controls drug access and use on NHS) lady to sign them. I make it sound easy and really it was very simple apart from the low expectations and fear of red tape and many other imaginary problems.

I guess it will depend on the way your haematologis thinks and works helped by your need and persistence. And there are trials of this drug which you may qualify to enter, others on this site have reported on them. Plus I think some teaching hospitals may be able to help.

If you search the archives you may find useful advice.

I wish you every success and keep us posted on your progress.

Mairead

[SirKitBored in reply to MPort]

Very many thanks for replying and for the information.

[Wyebird]

I’m so sorry you have been rejected by the nhs. Would it make a difference if you attended another clinic in different area? Is this the postcode lottery syndrome?

[SirKitBored in reply to Wyebird]

I have received excellent care from the heamotologists and team at my local clinic in England. I am therefore very reluctant to move to another unknown clinic. My Heamotologist is trying hard to obtain Ruxolitinib for me but has not had any success yet.

[Wyebird in reply to SirKitBored]

Oh dear you are between a rock and a hard place. I wish you well.

[Hidden]

Hi there, I am in a similar position to you. I was diagnosed with PV Jak2+ in 2006. I am now 71 yrs old. I take 21, 500mg HD per week (3 tabs per day) and 75mg Aspirin per day. I have wondered when the point will come to consider Ruxolitinib, but as you say it is not on the NHS. I have heard it is freely available in Scotland on the NHS. If so I would consider moving back there, as it was only in 2016 I moved from Scotland to England!

Please can anyone tell me if they know this is a fact? i.e Ruxolitinib is free on the NHS in Scotland.

Many thanks in advance for it might be life changing for me!