Weight gain and JAK 2 inhibitors: For those of us... - MPN Voice

MPN Voice

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Weight gain and JAK 2 inhibitors

15 Replies

For those of us with positive JAK2....

I was doing some research on the web to determine a possible cause for my tummy bloating and weight gain. I was surprised at the outcome of this search and it may relate to you as well. I'm not fully convinced that this is the cause and will put t it to my haemo next visit. I have the Jak2 gene.

"...the Jak2 inhibitor disrupts leptin's ability to send the signal causing abnormal hunger and excess eating..."

The article goes on to say that exercise, nutritional intervention and counselling will help. I think this is called leptin resistance and avoiding processed foods, taking soluble fiber, exercising, getting enough sleep, reducing carbs and increasing protein are suggested interventions.

There's much information on Leptin diets on the web, if you would like to check it out.

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15 Replies
Mostew profile image
Mostew

thanks. Always interesting to hear different thoughts

Sounds like the sort of diet recommended generally for MPN'S , antiinflammitory, might well stop problems before they begin..?

Sugar and processesed foods are known to cause craving.

Excersise good for us all, plump or not !! As is a decent nights sleep.

Hope you sort out your tummy .

Deefen profile image
Deefen

yes, I have been told by my haem that some JAK2 inhibitors can cause weight gain. Luckily I’m just on aspirin so far!

hunter5582 profile image
hunter5582

Very interesting information on JAK2 inhibitors. Thanks for posting it. Given how wide ranging the function of the JAK-STAT pathway is, it makes me wonder if there is some kind of link to hunger/excess eating.

I am thinking you are on Hydrea (HU), which is not a JAK2 inhibitor. It works differently.

HU is a cytotoxin that inhibits ribonucleotide reductase, immediately inhibiting DNA synthesis. HU inhibits DNA activity in hematopoietic stems cells and other cells in your body. Thus it reduces the number of blood cells produced, which is why it can help.

Jakafi (JAK inhibitor) inhibits janus-associated kinases (JAK) 1 and 2, leading to disruption of cytokine and growth factor signaling pathways. The JAK-STAT pathways regulate the production of blood cells, inflammatory cytokines, immune response and other bodily processes. The JAK2 mutation is a gain of function mutation that upregulates the activity of the JAK-STAT pathway. That is why a JAK-inhibitor is helpful.

Regarding diet, there is not question that it is important and can help. There is good support for an anti-inflammatory diet. Regardless of that, we need to do everything we can do to improve our overall health. A healthy diet and exercise are certainly important.

Thanks again for posting this interesting information. It is a good reminder that our bodies are integrated systems. Issues are often interlinked in ways that are not always apparent.

All the best.

in reply tohunter5582

Many thanks for the enlightening information Hunter. It's given me more food for thought and action. Cheers 👍

AndyKay profile image
AndyKay in reply tohunter5582

I agree, thank you.

Annula profile image
Annula

Thank Bobby - that's all useful stuff.I'll take note of that - I need to lose weight too.

AndyKay profile image
AndyKay

Thank you for sharing, I have had weight gain and bloating too.

Buggerbear profile image
Buggerbear

You are absolutely correct. I am taking Jakafi which is a JAK-2 inhibitor and have gained weight in the last two years. The meds do affect the leptin response and you stay hungry all the time. The article I read said you could gain anywhere from 6 to 12 percent of your weight when taking them.

3cance profile image
3cance in reply toBuggerbear

I am on Jakafi and was on hydrea until about 3 weeks ago. I had been in Hydrea for over a year but the Jakafi was started around June last year. I started gaining weight around September last year.

very interesting… is Peg a JAK-2 inhibitor?

3cance profile image
3cance

Thank you 222Bobby! I have been trying to figure out why I am gaining weight and why I can’t stop stop the scale from moving up! It has been so frustrating! And I feel puffy! I’m the only one of my healthcare team that seems concerned.

in reply to3cance

So true 3cnace...frustration extraordinaire here too. Last month I learned I had a tortuous colon and I swear it's developed in the last 2 years (since start of treatment), even though the haemo denies that. The extra colon I suspect is part of the added weight. No surprise then that I find it near impossible to get back to my pre-hydrea weight. I've read that on average an approx. 3kg weight gain is normal.....grrr!

All the best 😀

3cance profile image
3cance in reply to

I have been on hydrea and Jakafi. Hydrea was discontinued in last 3 weeks but still on 30 mg Jakafi a day. Reading Hinter’s response makes me think Jakafi could be adding to increased weight problem, too. Maybe not the hydrea? I’ll have to spend some time checking it out I guess.

Hi 3cance,

So far no amount of food selection or restriction has helped with my weight issue. I'm slowly coming to terms with it and hope the curve had flattened.

My specialist won't entertain an alternative, so I've no idea if all these drugs are the same.

Lasbrisas1 profile image
Lasbrisas1

Hello Bobby...I also have JAK 2...I am taking Hydroxy Carbinoid plus Xeralto Blood Thinner ...I do Intermittent fasting, I am never hungry, I eat my main meal between noon and 2pm depending on my Schedule...then at 5pm I take those 2 Tablets with 3 Brazil Nuts and 6 small dried Figs....I never snack, so no insulin spikes....I am Alternative Medicine too, so use lots of Herbs and Spices, Seeds too and Organic Coconut Oil for Cooking, nothing in Plastic Containers, ...as I say never hungry...this may help you too.

When I go shopping my fridge is empty and cleaned...never old food left in the Fridge...Good Luck Bobby...

Kind Regards

Cherilyn from London UK...❤

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