ruxolinitib and weight gain

[artydutch]

I am keen to know, if there is a way to avoid weight gain on Rux. If you watch your calorie intake, can you control weight or is weight gain a given. I would love to hear if anyone managed to controll this or was unaffected . I understand the drug increases appetite, but is this the sole reason for gain?

[ainslie]

I have been on high dose Rux for 6 years , for many Rux can increase weight but it’s the same solution as for those not on Rux. Ie to stop increasing weight or lose weight on Rux it needs less calories and or better calories or more exercise. It’s probably wise to avoid the naughties such as sugar and refined carbs, i eat 3 proper balanced meals a day, decent protein and veg at each meal and just enough un refined carbs for energy, plenty of fiber.

Protein and veg stops me feeling hungry and keeps sugar levels even. So , one doesn’t have to put weight on on Rux and no magic solution, just less and better calories and more exercise. I find doing exercise before each meal helps a lot as it revs up the metabolism before ,during and after food consumption.

[Cazbolac]

I hav been on Rux for 9 years for my primary myelofibrosis. Y s you can gain weight but if you eat a sensible and well balanced diet, you will be fine. It does not make you balloon or anything like that 😊. I would say however, be aware that like any drugs, there are side effects. Make sure they check your cholesterol levels during your time on Rux. I wasn't checked regularly and I have just learnt my cholesterol is high and now on statins. Perfectly treatable and definitely not a reason to not go on Rux. I have been able to manage my symptoms well on Rux until recently. Good luck.

[Quitojohn in reply to Cazbolac]

13 months in Rux now. Same diet, 3x fitness per wk, 3 km pr day walking, weight gain 8 kilos.

[william-Indo in reply to Quitojohn]

Reduce the portion of your meal and just take 2x meal per day.Avoid snacks and any food after 08pm.

If you want to accelerate your metabolisme, add 1 tsp apple cider vinegar every morning.

Try for 2 month and let us know the result

Cheers

[lizzziep]

I’ve been on on Rux for 3 months, I put weight on very easily and have gained 5 lbs, it does increase appetite and it is very hard to NOT eat extra. I exercise as much as possible, but am limited with that due to severe arthritis in my joints. I’m trying hard to lose the extra pounds.

[ainslie in reply to lizzziep]

I wasn’t aware it increases appetite, I havnt noticed that

[lizzziep in reply to ainslie]

Maybe we all react differently to it.

[Rupy]

hello, I’ve been on rux for more than 3 years now. I definitely watch my diet and control what I eat. No weight gain

[AirconBob]

All the above are right! Rux does not make you put on weight it increases your appetite....I am lucky in that I don't mind feeling hungry.. Though I did increase my 'target weight by 1Kg. maybe that made it a bit easier..

[Mal42]

I have put on weight, 1 stone. My appetite didn’t increase and eat the same healthy diet I did. I have got used to it. I have gone from a uk 12 to 14, I do like that I now that a bottom, but not so happy about my tummy. Best of all, I feel so much better on Rux and my bloods are well behaved,

[Anouchka]

all of the above and I’ve found the drinking lots of water helps stave off the urge to eat. I also carefully watch what and how much I eat.

[Yanico]

gained 21 lbs of much needed weight. I had lost 28 lbs. Now watching what I eat. After 6 months of Rux I’m not as hungry as was

[Bullace]

I did very well on Rux for 10 or so years until it stopped working for me. I did put on weight because I felt so much better and my appetite increased. Since coming off it and taking Fedratinib, which made me sick on the highest dose, I have lost weight again. My Haem has reduced the dose and added a low dose of danazol and I am feeling much better and putting a little weight on again. I think all Haematologists prefer you to gain a little weight so long as it doesn't get out of hand. I have Primary Myelofibrosis.

[EPguy]

On your question "if anyone managed to control this or was unaffected". I've been mostly unaffected since starting Rux, currently no change. In 2002 I saw a small belly starting (age 42) and I refused it. So for 20+ years I've had a diet that is by time vs by hunger, boredom or distraction. No regular snacks, this is essential. It's still working with Rux.

But other health conditions can mess with these plans.

[JP1952]

I have been on Rux for nearly 3 years and I have put on 7 pounds, I struggle to control my weight all the time.At the London forum one doctor said it happened because Rux stops the full up feeling in us, almost as if the switch stops working.

That maybe true with me, but also what has certainly happened is that my haemoglobin has been very low since starting Rux and consequently I am anaemic. I cannot do the same amount of exercise as I used to and therefore I am not burning the same calories. I eat the same amount of food, probably healthier than before diagnosis but obviously more than I need.

This is very frustrating because running was/is my exercise of choice and I am a foodie in that I love cooking and eating.

[Goose2023 in reply to JP1952]

exactly....That has been my experience

[tracey13]

Good afternoon,

My husband has been on ruxolitnib since 2019 he always seemed hungry and ate the wrong foods so yeah he gained weight.

Anyhow he does my fitness pal and counts calories he's lost all his weight so your answer is if you eat healthy you won't gain weight . X