Ruxolitinib and nausea : Hi, I've been on... - MPN Voice

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Ruxolitinib and nausea

francesb profile image
4 Replies

Hi, I've been on Ruxolitinib for 11 days, for the first 9 days felt great, better than for ages, then yesterday morning was sick several times and had nausea all day, nausea again today and don't feel well. I'm so disappointed to have lost my feeling well! Has anyone else had nausea and sickness on Rux? I'm on 20mcg dose twice per day. Many thanks, Frances

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francesb
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4 Replies
Norman45 profile image
Norman45

I was on the same initial dose and felt really well for four weeks then hit a brick wall feeling unwell and totally shattered.

Wrote a quick email to one of the Haemotologists and was told to half the dose which I have now been on for over a year.

Started feeling better almost immediately and this has continued.

Suggest you contact your consultant ASAP. Hope you feel better soon because it seems to be a remarkable new drug.

francesb profile image
francesb

Thanks so much for your reply. I'll request a lower dose. Best wishes, Frances

Twinkly profile image
Twinkly

Well hi there ! I was approved to take ruxulitnib 4 years ago on the majic trial ..so Iv been through the ups and downs with this drug , the one thing it seems to agrivate is the hiatus hernia ! The digestion is upset easily .so ,,the whole diet needs to be re assessed ...I did a complete detox ..drinking lots of water and home made soup .then I ate very small portions of fruit and fresh vegetables ,,until my body adjusted to the drug .. don't eat late in the evening ,use honey to sweeten ,,I also gave up over time drinking alcohol .now I don't eat any pork at all ..only chicken. And fish .. The dose I take 3 tablets ..morning and same evening .. The worst thing to take is fat !!

Don't eat fried food don't drink fizzy cans ,,,never drink co,co,cola ....it's difficult at the beginning ,but the rewards are really worth the effort ..

My blood results are excellent ,I feel very well ....keep in touch ,,twinkly xxxxx

francesb profile image
francesb

Hi Twinkly, thank you so much for your reply. I already live by all the things you recommend, have been a very healthy eater for years, mostly organic, nothing processed, fresh fruit, veg, fish, chicken, organic bread and salad is pretty much it with organic oats, yoghurt and blueberries sometimes for breakfast. I seem to be very prone to this, I got nausea on Hydroxy but not too bad, then bad nausea and acid reflux on Pegasys (which unfortunately didn't work for my counts) now even worse same symptoms on Rux. Haven't been able to eat for 3 days, weight is dropping off!. Have been told to reduce dose, determined to persevere. I'm hoping to find some medication that may deal with my naughty tummy so I can get on with taking the drugs! So glad you are feeling well, love your gorgeous dogs. Best wishes, Frances

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