I've had MF for over 30 years. I was rejected for transplant recently because not robust enough. I have been on Ruxolitinib for about 8 years very successfully but my already large spleen is growing again so my consultant has decided to switch me over to Fedratinib. I am grateful that there is an option but feel a bit as if it is the final one, which is scary, especially if it doesn't work for me.
I would be really grateful for any response on how the switch from rux to fedratinib has been for anyone?
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Bullace
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I'm about to make the change in a week's time so I'll let you know. I was on ruxolitinib only for 15 months or so but my spleen didnt shrink enough and the dose couldn't be raised because my platelets were too low. Good luck and let us know how you get on.
Dear Hunter thank you so much for this info. It does cheer me up to know there are other options. My consultant, who is lovely and really listens, hasn't mentioned any other options available in Scotland, where I live now, but I will ask him about these. Thanks again for being so supportive.
I’m sure it was disappointing to be turned down for a transplant. Fedratinib was designed to specifically treat people with MF. I was taking it for a while, but my doctor took me off of it. I did not have a big spleen and it made me very tired. I wish you all the best.
Thank you so much for your support. Yes being refused a transplant was disappointing, but Iwas also quite relieved, I have to confess, to not have to go through all that. It is a bit difficult to come to terms with there being no potential cure for me but just thank goodness for the drugs!
I recently made the change I have had mf for 13 years like you I was on rux for around 5 years when my spleen started to grow it was decided I should try fed I was tapered off rux 25/20 they took me down 5 every week till I was on 5/5 then added fed 400 in and after 1 week drop rux and continue with fed at 400 I used steroids to help me but it was ok I managed well fed made me really dizzy and it was hard stay awake I was stopped for a week and put on thiamine then restarted with thiamine at 100 and fed at 400 it’s been ok I don’t feel great but my bloods are ok and I did catch covid during my transition which I don’t think helped along with a large abscess amd a lung infection I seem be picking up any infection going iam on my 5th lot of antibiotics my hubby is wrapping me in cotton wool trying avoid any more but overall iam going it’s working it is my last chance I have low platelets so that rules me out for any trials I was warned about the sickness but it’s taken 3 weeks for that start I don’t know when I will feel ok again but iam hopeful everyone is different so it’s hard day how you may cope but it’s ok it’s not as bad as I thought hopefully you don’t have the same problems as me and it goes smoothly good luck
Thank you for sharing your experience so frankly. I'm really sorry you're having such a rough ride with the fedratinib and with the infections. I'm a bit nervous about the sickness bit too. Also the dizziness. I hope that it all settles down for you soon, with no more infections. I've only just had covid myself (second time this year), but luckily it was mild. All the very best for your treatment.
Have you started on the fedratinib yet? I've been weaned off Rux and started the fedratinib today. Not a moment too soon....the itching without the rux was horrendous
Not yet. Only just started reductions in the doses of rux. I do wish you the best of luck with Fedratinib. It would be good to share experiences. I think I will be starting either next week or the week after. Am dreading the return of symptoms as the dose of rux goes down.
I've been on fedratinib for about 3 months now, firstly on 200mg now 300mg. My platelets haven't allowed me to go to the normal 400mg. They also prescribed thiamine tablets just in case. The fed has shrunk my spleen . I've not had the "promised" gastrointestinal symptoms except for 1 day. It hasn't had any affect on itching but I don't seem to be getting any other problems. I will be coming off them soon as I'm due a sct in January.How have you found them?
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