Weight gain on Jakafi ?

[Anouchka]

Hi, I was diagnosed Jak2 gene last year April (PV) and didn’t tolerate hydrea nor was it having any effect… Now progressed to 20mg Jakafi and a side effect (I was told) can be weight gain… At first no gain but I did notice getting a more pronounced sweet tooth after a month on 20mg ☺️. My GP said to substitute with fruit. Like I said I didn’t notice any weight gain at first but there’s been a slow increase lately… Question: is this a steady increase or is there an average gain where it levels off? Has anybody else noticed a similar effect?

[ainslie]

I am similar dose of Rux, I haven’t noticed increase in appetite or sweet tooth, inclination to weight gain but this can be controlled by cutting out or reducing portions or more importantly refined carbs, I eat plenty protein at each meal and veg and healthy fats and just enough carbs so I don’t increase weight, I replaced white potato with sweet ones. Also of course exercise is important, in summary all the things we should be doing anyway. It’s possible also to lose weight on Rux, I put on 10 lbs on a 6 week holiday, but lost it in a month on return, I don’t diet but eat properly ie keep away from the naughties and exercise. Fruit is sugar mainly, if fruit berries are best, ie low sugar. If you feed a sweet tooth the more it wants sugar. When returning from holiday and eating sweeter things on holiday I noticed I was then looking forward to the next sweet thing. Once off the sweet things after a few weeks I don’t even think about them, my partner ditto.

[Anouchka in reply to ainslie]

Thanks Ainslie. I’ve decided that’s the way forward in any case, so am really glad for the confirmation. I’m not particularly overweight, in fact the opposite, but don’t want to give in to the meds deciding for me. Lol! I’m also thankful to know I wasn’t imagining any of it. Thanks again.

[StellaPFM]

I am on Rux too. Did gain about 4 kg in 6 months. Lost 2 kg now by really watching what I eat. I cut all the fats out, like cheese, cakes and try to maintain a healthy diet. Lots of veggi, low fat yoghurt and some fruits.

[Anouchka in reply to StellaPFM]

Thank you - at least I wasn’t imagining it and will take this on board moving forward.

[Tomsgranny]

Hi there. I’m on a trial - moved from Hydroxy to Jakafi in Dec 2021. I gained 2 stone over the first year and am now very slowly losing a few pounds. My sweet tooth has been a large part of the problem, but I do seem to be hungrier as well. Unfortunately I also have a hip problem which will require surgery, so I think the lack of exercise is a contributory factor. I’m now trying to follow a healthy eating regime with lots of protein, veg and fruit. It seems to be working - slowly! Good luck.

[Anouchka in reply to Tomsgranny]

Thank you - its that sweet tooth I find so maddening! Never had it before and it feels like a constant “nag”, not easy to ignore. Lol!

Good luck with your new diet and, once set up, your hip surgery.

[Margo18]

Hi. I have been on Jakavi for a year and know I have put on quite a bit of weight. Like u it is the sweet tooth Mine is caused by tiredness due to anaemia.( in part anyway). Off for a bone marrow biopsy today and have to be weighed That will be a real wake-up call as I can’t get into a lot of my clothes. Anyway if the meds work a bit of weight is probably a small price to pay.

Time to cut out the sweets

Wish me luck

Margo

[Anouchka in reply to Margo18]

☺️☺️😊 Good luck with the weigh-in. Yep, an even healthier lifestyle will be in the offing, and a determined stance against that sweet tooth. Thanks for the reality check too: life vs some weight gain, as long as the meds work. You’re absolutely right there, Margo.

[Exeter21]

I lost weight as stuck to Mediterranean diet as suggested . Dropped sugars cakes alcohol & feel v healthy for it also none dairy . Now on peg interferon . Food plays a big part for symptoms 👍

[Anouchka in reply to Exeter21]

Thank you. I’m certainly monitoring the food intake now (quantity and what I’m eating to figure the affects). Hope peg interferon is good for you.?

[GarciaB]

I learned many years ago to curb cravings for sweets with a protein. For myself, a piece of cheese usually works

[Anouchka in reply to GarciaB]

Great idea - thanks!

[SRH55]

I started on Rux in October last year, before that I was on Pegasus. Since being on Rux, I have put on 9lbs, I seem to be stabilising a bit now, I’m trying to walk a bit more now the weather is improving. I have found that I am quite hungry.

I was put on Rux as my ET progressed to MF & I did loose a bit of weight before I went onto Rux. I am finding it difficult to eat less, there has been some good advice on these replies.

Best wishes

[Anouchka in reply to SRH55]

indeed, I’ve found I’m more hungry too. Weight gain is a slow increase, but I’m noticing it. I’m just glad to know I wasn’t imagining it and the hunger. Thanks for your insights.

[Owl-fan]

I was on hydroxy for a long time but was having intolerable side effect so was switched to Jakafi 3 months ago. I just recently noticed that my sweet tooth was really getting stronger. I was craving cookies and I almost never have food cravings. I hadn't attributed the cravings to the Jakafi but the timing is right. I'm trying to control my cookie intake by snaking on baby carrots.

[Anouchka in reply to Owl-fan]

yes, it was especially cookies and cakes/pies…. I’m doing better resisting temptation. Good for you for switching to carrots. Best of luck!