Experience of Fedratinib

[kevinbros]

Good afternoon

Its never too late to wish everybody to wish everybody a happy and healthy new year !!

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

[Leighcox85]

Hi Kev I can’t say to much as I have only just started fedratinib I was on rux for 5 years I lost response and become very symptomatic I tapered of rux I was on 25 twice a day I dropped 5 each week till I got to 5/5 then added in 400 fedratinib with steroids for first few weeks then drop rux and steroids I was fine till that point I started having dizzy spells eye problems and some other Symptoms my doctor had forgot to prescribe thiamine so I had stop then take high dose thiamine for 5 days then restart and I have been on it now for just under 2 months and iam doing ok really tired but other than that it’s been ok I will know more next week as I have bloods next Thursday to see if it’s working fingers crossed my first ones were ok so hopefully it is are you thinking of changing if I can help you in any way I will best wishes leighanne

[kevinbros in reply to Leighcox85]

Good morning Leigh

Firstly thank you for the response and apologies for the delay in getting back to you.

I am aware of the necessity of the appropriate level of thiamine before commencing, mine is thankfully at the right level without any supplement being necessary.

I am still not in a position to commence Fedratinib at the moment, as under consideration for alternative treatments.

Thank you for your offer of support, my understanding is that there are only handful of you on this drug so in time, I am sure it will continue to work well for you and you will be the source of inspiration for others.

I hope your blood results were good yesterday.

Regards

KB