Request for my views on rux

[bruddery]

Hi there I received a request re ruxilitinib. I have to admit that I consider it to have been my “life saver” I was on hydroxyurea from 2007 to 2016 and had dreadful symptoms, constant itching, swollen spleen night sweats, and the most dreadful mouth ulcers and swollen tongue. That was so bad that my consultantns referred me to the dental hospital to see how it could be handled as hydroxyurea was for life! In2016 I was given rux. No more swollen spleen, no more itching, no more mouth ulcers or swollen tongue, occasionally have night sweats, but nothing like it was and very infrequent. The one downside is I developed skin cancer, likely affected by the use of the drugs, both hydroxyurea and rux. A couple of months ago I had a lesion removed from my nose and skin graft to cover the hole! However, it’s still a small price to pay for quality of life. Rux has given me back a good quality of life, hardly ever get fatigued any more. Good luck. Bruddery (Janice)

[Michael56]

Hi Bruddery you have just given me real hope after 15 years on HU and the opposite effects you have spoken of. So far the change to rux and side effects have finally started to wain after the dose was halved from 20 x2 daily to 10x 2 daily. Hope things continue to improve for you stay safe

[EPguy]

Which MPN do you have? I switched from HU to Besremi and I think it's going well. But my Dr has a preference for Rux and the symptom relief is tempting. I have PV Dx with ET features.

That's so neat that you're feeling ok.

Did you need many dose adjustments?

[bruddery in reply to EPguy]

Hi there. I have PV/MF. JAK 2 positive The rux was an “up and down” level for a while. I think I started on 15 x 2 it was increased to 20 x 2 for a time then reduced, up and down. For quite a long time I have been on 10 x 2 and I really cannot believe the difference it has made to my life. I managed to keep working full time, until I reached natural retirement level, the company I worked for did not allow anyone to stay on after 65! So now I’m an active retiree! Good luck let me know how you get on. Janice