Dieting on ruxolitinib

[Squirrelnuts403]

Hi how's things with everyone can anyone advise on dieting when you have pv and taking rux been on rux for 5 months seem to lose weight then very quickly regain the weight if I relapse from routine of dieting at times feel very hungry I do watch what I'm eating most of the time exercise regularly having a few problems with other things but dieting is my first goal it's not easy with weight gain on rux tia

[Janbu]

I’ve found exactly the same. Knowing Rux was a weight gainer I was very careful with diet , lost a little weight but gained the same back and more if I relaxed .

I crave carbs and sweet stuff if I take my eye off the ball. Nothing seems to stop the urge to eat the wrong stuff! I’m only a few pounds over my original starting weight but in 3 months I have become a yo-yo dieter.

[Badger1 in reply to Janbu]

Thank you for replying itsvery difficult to keep weight down struggling ATM loads of hurdles to cross ATM good luck with your battle

[EPguy]

Have you become more hungry since starting Rux? Or is your hunger the same as if you dieted before Rux?

I was wasting away before Rux so the extra weight was good. But then it was more than I wanted, so I eat all the same stuff, just less of it. But I lose appetite when I look at any belly.

[Badger1 in reply to EPguy]

Hi yes definitely seem to be more Hungry have been up and down since taking ruxolitinib I've tried and failed in the battle so far but will try again and cut portions down first it makes sense

[EPguy in reply to Badger1]

I think reducing portions about 10-15% is easier than changing habits, assuming habits are reasonably healthful. My approach in life was always sacrifice now to enjoy the future. Unfortunately my Last Dose turned that upside down.

For me more exercise is out because of my other condition. My challenge is getting hubby to feed me less, progress is better lately.

[lizzziep]

It definitely increases the appetite, as does Momelotinib, I seem to crave carbs and sugar, some days it seems uncontrollable - like an addiction! I am trying hard to lose weight, I put a lot on with Rux, then Momelotinib. I seem to get control and eat healthily for a few days then it’s like someone has injected me with something that makes me eat the wrong thing if there’s anything sweet in the house or far too much of the right things.

I have managed to lose 5lbs but it’s slow and hard going.

[Badger1]

Hi thanks yes same here I think addiction is about right it hard to keep on course

[Loubprv Volunteer]

I think it would be easier to start with if our consultants told us exactly why we would gain weight ( maybe yours did)Rux decreases the leptin produced in our adipose tissue. Leptin is a hormone which dictates appetite and energy use ( info on t'ibternet)

If I d known my appetite would insidiously increase I d have kept a wary eye!

I ve gained about 8 lbs which I'm finding hard to shake off, and also seem to put weight on easily.

I try not to eat carbs and sweet stuff which isn't easy but stick to soup salad chicken low fat foods. No alcohol.

Extremely frustrating but a trade off, I suppose, for taking a drug which appears to work well.

Touch wood.

Hey ho!

[ainslie in reply to Loubprv]

It’s important to mention that not everyone gets increased appetite, eg me, I don’t think I ever feel hungry and I am on high dose Rux. I will put on weight if I let it but for me it’s calorie related. I either have to exercise more ie burn more calories or consume less and better cals, avoid the high glycemic foods, eat 3 proper meals a day with plenty protein and veg at each meal and just enough complex carbs to maintain energy. I find doing some exercise before meals works to rev up the metabolism. Of course what works for me may not work for everyone and I am lucky I don’t get the hungries.

[EPguy in reply to ainslie]

Same here on appetite, I had no change in hunger, just a weight gain on an unchanged diet (now reduced). If anything I'm put off by large portions since I connect it to something negative.

From posts here, the hunger part seems to vary but the weight part is near always.

[ainslie]

see my reply to Loubprv

[ALlady]

I have had the same problem on HU. Within six months of starting it I gained 13 pounds. My usual methods of reducing were futile. I exercise and follow a healthy Mediterranean type diet and intermittent fasting type plan. That has worked very well before HU.

After almost a year of hearing my whining, my hematologist prescribed a low dose Zepbound. It has slowly helped me get the pounds off.

Anxious about my next stap though! I fear he will want to cancel it now that I’ve gotten the weight off. He did suggest I space doses two weeks apart now that I am back at my starting weight. I feel so much better with the pounds off and am exercising more often and longer. I hope that’s enough!