Myelofibrosis

Oh dear i saw my consultant yesterday and apparently i have intolerance to the drug ruxolitinib…i have had a few problems with it but on the whole i thought i was ok but i have gained a huge tummy and dare i say very windy habits
So o have a scan on monday to see what is causing my problem and in the meantime there are plans to put me on new drug fedratinib. My consultant is so good and informative and i have every faith in her apparently i shall be first to have this drug which in a way is exciting …

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Hello @Suzyq. I am really sorry to hear that you have been found to have an intolerance to the ruxolitinib. I too have myelofibrosis and have been taking ruxolitinib for almost five years. Please let us know how your scan goes, as and when you feel able. As you say, in a way, it’s quite exciting to be the first person to try the new drug. I wish you well with it. Warm wishes. Willow X

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Hello there @Suzyq, thank you for posting. So sorry to hear that you are not tolerating the Ruxolitinib and having uncomfortable side effects. It sounds like you have a great Consultant who will talk you through your scan results and the plan going forward. Please do call us if you do need to talk anything through and do take care, Gemma How to contact Blood Cancer UK | Blood Cancer UK

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Hi @Suzyq sorry to hear that you have an intolerance to the drug ruxolitinib.
Scary for you having gained a huge tummy and very windy habits
I am glad that you are having a scan on monday to see what is causing the problem.
Interesting that there are plans to put you on a new drug fedratinib and that you will be the first to have this drug which in a way is exciting, but also again scary I expect.
Look after yourself and please keep updating us.

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Thank you all for your kind wishes i will keep you updated on what is happening x

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Hope the scan all went well and that you’re doing okay @Suzyq!

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Thank you Alice my scan went well and my consultant is weaning me off ruxolitinib then its the new drug fedratinib quite exciting as i understand im the first to have it but its going to take a couple months and steroids with lower dose of ruxolitinib to wean me off anyway fingers crossed all goes well im feeling positive

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Oh @Suzyq exciting, scary times for you, and I am glad that you are feeling positive please keep letting us know how you get on.
Yes, fingers crossed for you.
Look after yourself

Update…had ruxolitinib dose lowered and within 2 months will be on new drug …having to take steroids to alleviate any side effects but they are making me so hungry but im so pleased my consultant is doing everything to keep me well and the steroids have actually stopped me being anemic which is one of the reasons for coming off the drug besides other problems but im excited to be.the first going on new drug

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Oh @Suzyq oh, you trail blazer, you, so you are the first person to go on this new drug, your consultant seems to be looking after you, please let us know how you get on.
Look after yourself

Hi update on weaning of ruxolitinib i dont feel very lively at the moment tired but cant sleep getting huge as steroids boost my appetite im now down to 5mg of ruxo and 15mg steroids …i see consultant next friday dont know how they are going to finely get me off ruxo and on new drug but cant wait to try fedratinib as im sure this will be right for me from what i have researched will let you know after hospital appointment

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Hi @Suzyq yes, let’s hope your appointment goes as you want it to.
Perhaps write down all your symptoms and how you are feeling now, plus all your questions etc so you cover everything you want to say or have answers to when you have your appointment.
Look after yourself and please let us know how you get on.