Ruxolitinib: Hi, does anyone know why Ruxolitinib... - MPN Voice

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Ruxolitinib

Sunshinesan1 profile image
8 Replies

Hi, does anyone know why Ruxolitinib has made me gain weight?

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Sunshinesan1
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8 Replies
francesb profile image
francesb

Hi, weight gain is one of the listed side effects of Rux. My doctor said it may be due to slowing the metabolism but wasn't sure of how it does it but it is recognised that it does cause weight gain in many people. I've reduced portion sizes and cut out what I can from my already very healthy diet and still put on weight. Best wishes, Frances.

Sunshinesan1 profile image
Sunshinesan1 in reply tofrancesb

Hi

This is something I was going to try ! I was 8 stone 2lb and since being on Ruxolitinib I am now 8st 8lb. Not overweight I know, but feeling low as my lovely dresses don`t fit me now, and its going to cost me too much to buy more. Have to be grateful that I am feeling okay though. Not sure if I should bother to have smaller portions at meal times now.

Thanks for your information.

Best wishes

Sandie

jane13 profile image
jane13

Hi, reduces spleen size so could b u no longer have pressure from spleen telling u that r u full?

Skye333 profile image
Skye333

Hi I have just started taking Ruxilitinib and I believe the reason is that it shrinks your spleen therefore your stomach has more space and you feel hungry. I could eat for England but I’m trying to make it healthy food that I eat.

Janet x

Sunshinesan1 profile image
Sunshinesan1 in reply toSkye333

Hi, thanks for this information, it does sound like the cause, but not sure as some people say it slows the metabolism and others say it reduces spleen size ?? I will contact my Research Nurse to see if she has any answers.

Best wishes

Sandie x

JediReject profile image
JediReject

Hi there, I've been on Rux twice now once pre transplant and now post transplant and both times it has put my weight up. The first time I was chunky enough so didn't need it, but post transplant I lost alot of weight and struggled to gain even when on steroids. Rux replaced my steroid and since I'm hungry most of the time and more so I'm depositing fat easier so gaining weight finally.

Both times there has been no impact on spleen size and pre transplant it was plus 20cm taking it past my naval. So its the effect of the drug itself. Though probably increased if it does happen to shrink your spleen. As is suggested if it is an unwanted side effect you need to maybe look at changing your eating habits and hopefully that might be easier with Summer on the way.

Best Wishes -Chris

Paul42 profile image
Paul42

It can definately be an effect of going on Rux. I put lots of weight on after starting it and have struggled to lose it.

I dont believe its down to shrinkage of the spleen as mine didnt really shrink much. Think it may just be the metabolism effect.

rkhabtec profile image
rkhabtec

Hi I have been wondering the same thing. I hate cancer I am 12 yrs out breast cancer clean. Lost my husband to lung cancer 8 years ago and my Mom to Pancreatic cancer 3 years ago My daughter is in remission from Perionteal cancer 4 years ago Cousin to Colon a few months ago. By The Grace of God 33 years sober. Had a stroke in July 2016 hurt my leg the end of Jan went to er and transfered me t different hospital Was diagnosed with PV after they drew out 2000cc. I had terrible migraines before. Started with Platlets being 754 and was on Jakafi 10mg for 2 weeks to see if it would work for me. Cried when platlets came down to 704 on next blood draw Then started on 20mg for 2 weeks took my platlets down to 234 Really cried. Have been on 20mg since 2nd week of Feb. I am a 68 white head of Laundry Dept for a facility of Mentally Challlenged clients I work Mon thru Fri 5:30am to 1:30 pm. Have been there going into the 15th year. Everyone says that I look great and healthy. However to me I don't like the gain its 13lbs since I started. It kicks in the anorexia part of me but I am trying to go with as long as I feel healthy this is where I will be At least I am alive to enjoy my 2 Daughters 10 Grandchildren and 2 Great Grandchildren. Above all I want to thank everyone here for the support One Day At A Time Love you all. Good Luck to us all.

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