response to fedratinib

[Scaredy_cat]

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?

[beetle]

it seems that there are not enough people taking fedratinib to be able to help you answer your questions. That’s a shame as we are such a supportive group. The decision has been taken for me not to move to fedratinib from Ruxolitinib. I think this is because I’m already pancytopenic and Prof Harrison feels I should wait for the probable next drug momelitinib. It is apparently kinder to low counts but is not yet available

I hope you get your itching sorted. Unless you have actually suffered with it I don’t think people realise how distressing it can be. Hopefully if you’ve not started diarrhoea/nausea they will not be a problem for you

Very best wishes, Jan

[Scaredy_cat in reply to beetle]

thanks for your reply. I'd wondered about pacritinib because my platelets are low but it is still only being tested. I thought professor Harrison may have been able to prescribe stuff not yet ready but apparently not.

[beetle in reply to Scaredy_cat]

I do know she has listed me as a ‘good candidate’ for whatever the first access to it is😩

[Leighcox85]

I have been on fedratinib for 4 months i didn’t get side effects straight away it was more dizziness then I started on thiamine and it helped but then the side effects came throwing up out of nowhere and diarrhoea at random times it’s been 4 months and I don’t feel great at all but my counts are ok everyone’s different but you get monitored quite closely so any problems you can ask about hope this helps a little

[Scaredy_cat in reply to Leighcox85]

im ok at present but have only been on it 5 days. They've given me thiamine and some anti nausea and anti diarrhoea pills just in case but I haven't needed them yet.

[Scaredy_cat in reply to Leighcox85]

have you found it's helped with mf symptoms like itching?