Ruxolitinib and weight gain

[Mal42]

Hello all

I have been on ruxolitinib for a year and hydroxy for 5 years. I had lost weight as I now also gave cll. I was very pleased to be feeling better, bloods behaving themselves and have gained the 1/2 stone I had lost. But now I have gained another 1/2 stone. I went out to an event, I kept distanced, for the first time in two years, and my skirts wouldn't do up!! Is there any kind of diet that has helped anyone else with this issue.

Thank you, I hope this doesn't seem too frivolous.

Mal

[Inca]

Yes me too Rux for 3 yrs, can't fasten anything !! Just been a discussion about this recently I think. Strange thing is I am still skinny every where but waistline!!!Active ,horses ,dogs,tiny meals often ,nothing fatty or creamy,don't like sweet things at all ,no alcohol......its defo the Rux.Best to you.😀

[Mal42 in reply to Inca]

Thanks Inca. It is on the waist mostly, I am just wondering when it will stop. I feel like a balloon every time I step on the scales another 1lb appears, I’ve got a bad ankle at the moment so I can’t even walk much. Take care.

[ainslie in reply to Inca]

For some Rux can increase weight, bottom line is less calories and more exercise, sugar and refined carbs are the culprits, I drastically reduced those and fill up on veg and protein and a little complex carbs and healthy fats and it works, I eat the same amount but better quality, it works and I don’t feel hungry.I am on Rux 17.5mg BID for PV since four years

[Inca in reply to ainslie]

I do eat very healthily..the odd thing is that my actual weight of 50 kilo has remained exactly the same all the way thru my P V of 12 yrs nearly,Hydrea first then Rux nearly 4 yrs. Consultant is very happy that it stays the same,I think my arms & legs are probably thinner ,hips are narrow,it's just the middle bit.I have lots of exercise,I still work in my studio ,sculpture itself is energetic,G S D dogs take a lot of exercise & training.

Oh ,I am sure it's the Rux,until HU began to poison me I had my slim waist. There is the spleen too,mine is shrinking evidently & bloods are really good for the first time ,who knows what goes on inside, gas of course with Rux I suppose that bloats us a bit?I have 10 mg morn & night.

Treated in France,tested monthly,inc heart,lungs,& much more.I am ok but tire ,that is age as well of course.Very Best ainslie,you seem to have it right.😀

[Orangeboykitty]

I don't think there's anything you can do about the weight gain. I had the same issue when I was on ruxolitinib. I watched my diet and had never been overweight so my weight gain wasn't extreme but it was there, mostly in my waistline.

[Mal42 in reply to Orangeboykitty]

Thank you, yes round the waist it is it seems. Are well maybe some new clothes are in order. Thank you.

[ProudHarry in reply to Orangeboykitty]

What do you take now that you are off rux?

[Orangeboykitty in reply to ProudHarry]

I was on Pegasys for 2.5 years. Just started Besremi.

[ProudHarry in reply to Orangeboykitty]

Thanks!

[skipperL]

Having been on Ruxo for several years now I have ballooned around my middle as well! I originally thought it was lockdown and eating too much, but now I’ve been dieting for some weeks now there has been no change. I have given in and bought larger size trousers …..SkipperL

[Inca in reply to skipperL]

No No! Just buy some elastic and stitch in😂

[skipperL in reply to Inca]

I’m ashamed to say that I’m not capable of such expertise! Can just about sew a button on ….

[Inca in reply to skipperL]

Aye Aye skipper L, know what you mean,I have found tho that a larger size means baggy everywhere else!! Slim female I am still but I don't sew,only plaits for show horses ,so I have put elastic in every pair of jeans and posh trousers I own ,hopefully the stitches are never seen.Best to you.

[skipperL in reply to Inca]

No can do as it’s too late now - but at least M & S has benefitted!

[Mal42]

It seems elasticated waists are the answer. Though I should probably try some mindful eating as ainslie suggests before I totally give in.Thank you for your replies it has helped.

Mal

[Cja1956]

I also gained weight on Rux. My doctor took me off it 2 and a half years ago and my weight has steadily decreased. But I also don’t have the same appetite that I had before and have stopped snacking between meals and I’m eating less carbs. I wish you the best.

[Otterfield]

I was delighted how quickly I gained weight after being frighteningly underweight at diagnosis. I have gained 2.5 stone and am now at the stage where further gain wouldn't be good. Mine is also on my waist but less of an issue as I will be having an SCT in the next month or so, so I think it's good to have some weight in reserve.

[Inca in reply to Otterfield]

e hugs & very best to you in the next few months.Will have you in my thoughts.😍

[Cja1956 in reply to Otterfield]

I agree. A little extra weight is a good thing going into an SCT. I, too, wish you all the best in the upcoming months. I will have you in my thoughts for the best result possible.

[Mal42 in reply to Otterfield]

Sorry what is SCT? I hope it goes well. I do feel the extra 7 lbs on top of my normal weight is beneficial in case I loose weight after any other health issues that may happen, I am 80 after all. Take care.Mal

[Otterfield in reply to Mal42]

SCT stands for stem cell transplant, which used to be more commonly known as a bone marrow transplant.

[Mal42]

Thank you. Good luck.

[Itch]

hello, not frivolous in the least. Weight gain is one reason I’m reluctant to start Rux. I’m currently trying Keto diet, helping with bloating at least. Good luck 🤞

[Bobadog]

I agree it’s not frivolous…I’m rather reluctant to start Rux due the weight gain issue.Will have to increase my self discipline ++