Should I be asking for ruxolitinib?

[Fika500]

My haematologist said the long term plan was to get me on Ruxolitinib and I'm wondering whether I should be pushing for it or just leaving it to his judgement. I had Ploycythaemia Vera for 27 years ( diagnosed at age 47) and ,besides some sort of radioactive injection in the early years, lived well on venesection which was eventually only needed every six weeks. A couple of years ago it has progressed to probable Myelofibrosis- my spleen was 23cm two years ago, I developed gout which is well controlled with Allopurinol. He sees no benefit in doing a bone marrow biopsy. I am now back to four monthly appointments. However I am increasingly fatigued and have had episodes of high temperatures veering between shivers / sweating , aches and being completely wiped out. I don't know whether to be relieved if I don't meet the criteria for Ruxolitinib yet- the potential side effects of the treatment can be off putting - or pushing to get on to it to increase my life chances. I would appreciate people's views.

[jane13]

I found Ruxo made a big difference to me and wish i had got it earlier before I got full blown MF

[beetle]

I've been on Ruxolitinib for nearly 4 years now (post ET MF) and I don't know how I would be now if I hadn't been taking it but it has not proved to be 100% answer for me. My Hgb dropped when I started it and and never recovered so I'm now transfusion dependent. My platelets also dropped and most of the time they are above 50 but have been down to 30. The only way you will know if Ruxolitinib will be a good choice for you is if you are able to try it. As you are experiencing symptoms it would be a good idea to discuss these with your haematologist. We know that at the moment the only cure for MF is transplant so the name of the game for the rest of us is symptom control.

Best wishes, Jan

[Fika500]

Thank you Jane13 and beetle. Beetle I'm sort to hear about the adverse effects you experienced and it must be difficult having to rely on blood transfusions. I was thinking I may just swap one set of problems for another - I have a reasonable quality of life at the moment for a retired 77 yr old. Fatigue is the biggest problem. Luckily my enlarged spleen is not causing many problems. I have my next appointment soon and will discuss with my haematologist.

[Mardi]

It should shrink your spleen so I would do it.

[Fika500]

Thank you Mardi but as my spleen is not really causing me much discomfort, I wonder whether the risks may outweigh any potential benefits. On the other hand I think I'm right that the evidence is that Rux may prolong life.