what next after ruxolitinib for MF?

[Scaredy_cat]

Ive been on ruxolitinib for about a year for MF. It has gradually been increased to 2x10 mg a day but my platelets have fallen to c76 so my consultant wants to reduce my dose. My spleen hasn't shrunk. Is there any one out there with MF that has stopped ruxolitinib? What haveo you moved on to? How are you getting ?

[Leighcox85]

Iam actually changing as we speak I have had to taper my rux after 5 years I lost response my dose was 20/25 my platelets sit between 30-70 so my choices were limited as most trials require a platelet count of 100 so fedratinib was decided for me I start tomorrow as I have my rux at 5/5 so hopefully this works hope this helps a little x

[Scaredy_cat in reply to Leighcox85]

Thanks for your experience. I read one of your earlier posts re pain in abdomen. I too had a pvt about 25 years ago which was intensely painful. Before that i used to get a lot of gas that left me bloated and a lot of pain. Since I've been on aspirin for ET and now MF, my gp also prescribes lansoprazole to reduce stomach acid. It has certainly had a beneficial affect on painful wind in my upper intestines though Rux had increased gas lower down but it isn't painful (except for those nearby!)

[EPguy]

There is a new Jak2 inhibitor that is specifically for too-low PLT on Rux. Vonjo ( Pacritinib) It just got FDA approval but unfortunately I don't think it's approved yet in UK.

But there is this study that Guy's was involved in that might be worth inquiring. Compassionate use can mean access before formal approval:

"Long-Term Treatment With Pacritinib on a Compassionate Use Basis in Patients With Advanced Myelofibrosis"

ctibiopharma.com/wp-content...

[Scaredy_cat in reply to EPguy]

Thanks for the information