Experiences with

Fedratinib

There has recently been changes in Australia making Fedratinib available on compassionate grounds for high risk MF. Has anyone tried it? I've read the research papers available, but none of them address its potential to control extremely high platelet levels. Thanks

MPN Voice are putting together a Patient Group Submission for a forthcoming appraisal by NICE, of Fedratinib for the treatment of myelofibrosis patients with an enlarged spleen or other symptoms.

I'm currently taking Fedratinib and Danazol and am having 6 weekly blood transfusions. In the last few months I've noticed increased itching. Last night I woke at 2.30am and the itching made it impossible for me to lie still and go back to sleep.

Here an update from Hematology advisor related to you with Myelofibrosis refractory or intolerant with Rux https://www.hematologyadvisor.com/news/myelofibrosis-fedratinib-effective-second-line-therapy-risk/?

After some RBC transfusions, blood tests and BMP I enrolled on FEDORA clinical trial November 2022, taking 400mg Fedratinib daily and 250mcg Besremi (Ropeginterferon Alpha 2b) every 2 weeks.

Fedratinib is not reducing my spleen although it isn't growing much either. I also find that I often feel queasy quite soon after taking the drug, though this lessens as the day goes on. For me, rux was a miracle drug which made me feel much better. I can't say the same about fedratinib.

I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was in my late sixties with no other serious health issues.

How long before your spleen began to shrink

I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first 4 week cycle and I am glad to say I had no identifiable side effects.

I was immediately asked if I wanted to join a new research study to evaluate the tolerability, safety and activity of fedratinib combined with ropeginterferon alfa-2b. I signed up immediately thinking at least I should get monitored very closely.

Those of you on fedratinib: how long before you saw a response to quelling symptoms of MF especially itching? Those of you that had side effects from the drug like nausea diarrhoea etc - how long after you started did they appear?

I would be really grateful for any response on how the switch from rux to fedratinib has been for anyone?

normally come here to moan but I feel I need speak to someone since the pandemic it feels like I have completely different team altogether my liver specialist hasn’t seen at all in 2 years and has ignored all communication I have bleeding varices which he used to band every 6 months they put me on fedratinib

I would be grateful to receive any feedback from anybody currently being treated with Fedratinib in relation to myelofibrosis. In particular anybody in the USA where it has been in use for a longer period of time than Great Britain. Regards KB

Fedratinib may help symptoms more. Rux is not approved for ET bec it did not work well. ET is less cytokine affected. But itching was improved a lot. HU and PEG on symptoms: minimal benefit with both. High baseline has more benefit.

I’d hoped, earlier in the year, when fedratinib was approved and funded, that that might well be a good solution. But no dice. Anyway, thank you all for being there.

." -- -On another approved Jak-i, fedratinib, Dr Mesa seems not too impressed vs Rux. <<it’s not clear that there is necessarily a clear advantage between one or the other>> -- https://www.targetedonc.com/view/mesa-discusses-treating-myelofibrosis-and-other-mpns#

I was taking Fedratinib and hydroxyurea for a while but my doctor took me off of the Fedratinib in October. Last night I had the strangest experience. I went to sleep at my normal time but I was woken up at about 1:30 AM by extreme pain in my legs and my arms.

The haematologist I see whom I thought was prepared to try Fedratinib for me has changed his mind. ☹️ Its the anaemia ( which both the ruxolitinib and the MF contribute to) thats related to fatigue snd general grottiness. Some of the newer drugs don’t seem to cause so much anaemia.

Can anybody share their experience of changing from ruxoblitinib to Fedratinib as this is a possibility in my treatment of myelofibrosis. Thank you Kevin B