Ruxolitinib For Mylofibrosis (Top voted first)

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Is anybody out there taking the new trial drug Ruxolitinib for Mylofibrosis?

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1

Yes

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2

Hello Dave, hope all is going well for you. My husband has recently started taking Ruxolitinub for Mylofibrosis and seems to be responding well, it's still early days (3 weeks to be exact) and feeling much better. How long have you been on this drug and are you responding well?

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3

Hi Carol. I've been on the drug over 4 months. I started on a sustained release version for a 4 month trial. This trial has stopped and they found the sustained release version did not work as well. I've been on the regular version 15mg twice a day for the past 10 days and I'm feeling pretty good. I've had relief from most of my symptoms and shrunk my spleen from 13.5cm to 7cm. The only complaint I have is a bit of light headedness or dizziness. I hope this drug works the same for your husband.

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4

Thanks dave, hope you continue to make good progress. My husband is having weekly blood transfusions as his hemoglobin levels are low 8.6 at the moment. Do you need transfusions? My husband is on a clinical trial here in Spain and has to have 2 weekly reviews at present. His spleen size was over 20cm. He hasn't got as much pain since he has been on the medication but still has to have painkillers, he is now putting on weight and overall his condition is improving. What an awful disease this is, let's pray a cure is found soon. He takes 20mgs of Ruxolitinib twice a day. So nice talking to you.

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5

Carol, No transfusions yet. My hemoglobin is 11.7 and platelets are 138,000. My counts dropped when I first started the drug and have mostly bounced back. I tried a higher dose, but my platelets dropped to 118,000.

I hope your husband does well.

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6

Just to make it easier for you both to find both discussions:

https:/­/­rxchat.com/­Discuss/­SECONDRY-MYELOFIBROSIS-227522.htm

How are you both doing now with this treatment?

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7

Hello. I am a 53 year old man with pmf and I have been on this study for 16 weeks now and I am taking 30mg of the ruxolitinub per day and im feeling great no side affects from either. But after the study what next? What do I do? Will I get worse in time? How long will this drug keep me at this level. To be open about it, this scares the hell out of me, I feel better then I have in years but time keeps ticking and so does this disease I hope this works for me and I hope something new comes alone that is better then what I am taking now. Can any one out their relate with me? Lets talk. Thanks.

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8

My husband has been on ruxolitinib for about 7 months and is feeling so much better. Was unable to get the drug over Xmas and he went downhill very fast, but as soon as he started again, he picked up within a few days. The only problem seems to be skin eruptions, especially on his face and neck. Has anyone else hd this problem?

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