Jakafi/Weight Gain

[Miriammusic]

I will preface this by saying that I am truly grateful that I am feeling better on Jakafi. It has only been two months, but my numbers are better and most importantly, I am not having the debilitating side effects of GI issues that were ruining my life on Besremi. So, I do realize that health is number one. However. 😬 The weight gain is really tough on me. I have been googling and can't seem to get a handle on just exactly what it is that causes it. Some papers say it has to do with water retention within the cells or something, others say it has an opposite ozempic effect, whereby the signal that tells your body you are full, does not kick in. I would like to try to understand what I can try to do to combat the gain. Full disclosure here. I started at 113 and am now at 122. I fully understand that I would not be cast for The Biggest Loser Show here in the States. I am not fat. But I feel uncomfortable, and I don't know how far up the scale will go. 9 pounds in two months was unexpected. And on a practical level, I can no longer fit in any of my pants.

Does anyone have any info as to why/how Jakafi makes you gain weight and/or strategies for fighting it? I do exercise daily. Again, I know we all have way bigger issues here so please don't judge. 🙏

[DougyW]

It's great to hear you are generally better & your numbers are good. A bit more info please. Are you generally hungry & eating more, have you tried to cut back?

I've read a bit but no first hand experience. I'm on Pegasus

[Miriammusic in reply to DougyW]

I am trying to watch and my husband says he doesn’t notice me taking second helpings or going back for more. Who knows? I do feel a bit hungry. I guess I was hoping for the definitive answer as to what the mechanism is so that maybe I could combat it that way.

[JP1952]

I think everybody on this site will agree with me on this, no judging here but supporting. I sympathise with you because I have also gained weight on jakafi but I'm managing it at approx 10 pounds gain and staying at that. However, it's hard.I thought it was because I was so fatigued I wasn't burning the calories despite massive efforts. At the London forum an MPN expert stated it was because the jakavi didn't trigger the full up switch within us. Maybe, a combination of both but I do feel like I could eat at any time and have seconds at every meal.

Health wise like you I am doing better on jakavi and it stopped my itching so obviously I am sticking with it. It is very frustrating because it's difficult for us to exercise as in pre MPN days due to the fatigue so we have to stop eating when we don't feel satisfied.

Think the only answer is healthy food and iron will discipline combined with as much exercise as we can reasonably manage. However, we should be enjoying our lives.

Good luck and best wishes.

[Miriammusic in reply to JP1952]

Yes. I have also heard that theory that it works like the opposite of Ozempic. That the signal that tells us we are full is not released with Jakafi. Who knows? And agree with the exercise comment. Thanks for your support and best of luck to you too!

[EPguy]

Sorry the Bes didn't work out, same here for different reasons.

9 lbs in two months is fast at 113lbs. How are your CMP test results pre and post Rux?

I had stages terrifying weight loss starting with Covid March 2020, my MPN, and my Sjogrens. (Male 5'7" 118lbs at worst). It's frustrating to waste away from illness no matter how much I ate. The only way to add was muscle building exercise.

Starting ~ month 8 on Rux I started adding weight. Now I'm over my preferred 130. But I've had no change at all in appetite, eating a predictable diet every week. So for me it's not intake or hunger, but a change in metabolism. I finally have my missing mini fat belly area so it's more than water for me. I do have less exercise now from the Sjo, likely a toss up with reduced muscle mass.

So far my 30" pants still fit, and I intend to keep that way. I understand these vanity issues can add to the stress of disease, so it is real and no excuses needed.

My solution is to eat all the same diet but just have less of it. My husband is still used to fattening me up so it's a slow change.

[Miriammusic in reply to EPguy]

Maybe metabolism plays a role in it, excellent point. And I’m going to watch portion control. It’s not only vanity. Lol With how expensive everything is these days, I really don’t want to go buy a whole new wardrobe. And I guess I’m also wondering will there be a stop at some point? Or is this going to be a Willy Wonka blueberry girl type of thing? 😜

[EPguy in reply to Miriammusic]

I have the same question, how much intake reduction will it require two years from now. I'm hoping for a dose reduction, something I fatefully failed to insist on with IFN. My VAF mutation was continuing down last check, maybe at some point that could allow a reduction if it keeps up.

Understand on the very practical issue of new wardrobe, that quantifies part of the importance of the weight gain.

[Ggrana3192]

I’m on Jakafi also , it’s been 10 months and I’ve gained 10 pounds also. I take 2 -10mg a day and I was wondering how much you take . It’s helping my counts as well , better than anything I’ve ever taken and I’ve tried them all, so I’ll deal with it, it’s very upsetting my clothes are starting to not fit me.😔.