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. 🙏
Written by
Miriammusic
To view profiles and participate in discussions please or .
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
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.
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.
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!
Hello - that’s putting it in a nutshell for myself too. Sometimes pangs of hunger, other times no appetite and picky about what I eat. I’ve now started a different approach- and perhaps this can help you too @Miriammusic one day u will have my “normal“three meals (always light) and the next day a fairly late breakfast and then just supper (skipping one meal) and it has kept weight steady or reduced if one day I didn’t stick to light portion. Hope this helps, since we’re all so very different - Good luck!
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.
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? 😜
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.
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.😔.
I've been on rux for 4 years and have seen a steady weight gain. Its got me really down. Yes, very grateful for the drug but weight gain is depressing. I'm finally shifting it now on the fast 800 diet ( in memory of Michael mosley) . I found the reduced saiety to be the culprit. I never used to be a big meal eater. But since fasting and understanding it's science I eat slower, chew alot more and the slow wright loss is encouraging. Good luck you can do it.
I’ve been on 2 x 20mg Rux/jakafi per day since November, I’ve put a lot of weight on. I am prone to be overweight anyway, but I’ve been trying to lose it to no effect. The consultant told me the drug is designed to put weight on as one of the main symptoms of MF is weight loss. I think it changes the metabolism and increases appetite. I have severe arthritis and can’t walk far so I swim and do aqua fit. It is a big struggle to lose weight but I’ll keep trying as, obviously, the extra weight isn’t doing my joints any good.
Sorry to hear of your weight struggles. Unfortunately, Jakafi suppresses the JAK2 action to reduce certain blood counts but it also suppresses the JAK1 action. From what I found doing research and checking Incyte’s webpage - Incyte developed Jakafi - the weight gain is a real side effect of Jakafi. There have been reports of weight gains of 20% and in some cases as much as 30%.
JAK1 action involves leptin resistance, metabolic reactions and other similar metabolism-related issues to a lesser extent. If you had metabolic issues before Jakafi, you would likely have weight gain difficulties.
I myself have experienced weight gain but my hematologist has me on intermittent tourosimide (fluid) pills which helps with fluid retention which is also a possible side effect.
I don’t like the weight gain but the benefits of Jakafi have had me in clinical remission for almost 20 month.
Risk vs Benefit is part of dealing with MPNs. Remember, MPNs are chronic but manageable.
I reading about leptin right now. I think you have really nailed it. That seems like it is the reason behind the weight gain and coincides with many of the papers I have read. There are some ways listed to possibly counteract and I will be looking into them so thank you so much! Are the fluid pills you get any different from the otc water pills you can buy at the drugstore? I definitely will discuss with my doc before taking any diuretics but sounds interesting
Leptin is one of those things very few doctors acknowledge as a possible problem. I truly believe I have been experiencing leptin resistance since my teens! Of course, the standard doctor reply has been Eat less, Eat better, Move more. I have struggled with weight again since being on Jakafi - haven’t quite found the “formula” for me but I still watch my diet and move as much as possible. At 74, some things just are harder as our bodies age.
The fluid pills I use are prescription not otc. OTC does not contain the same formulary here in the US.
My doc also want to stop my Pegasys and reduce Jakafi to 5 mg daily only, since my blood work looks stabil and HCT at 38 for half year.
I am still worry if I have to stop the Pegasys and cut Jakafi to 5 mg only, because it work for 12 hours only and left the remain time in a day without medication
I am still on Jakafi - currently 10mg am 5mg pm. My hematocrit was 37 at my April appt and I did not want it to go too low. I am seeing my Dr July 15. I do adjust my dosage with dr’s agreement when assessing my bloodwork which is done every 3 months. Even with some of the possible side effects, I have not had a stroke, heart attack or blood clot - even before diagnosis.
For me, a hematocrit between 36 and 39 is the sweet spot. My Jakafi calls for 2 doses a day as close as possible to 12 hours between doses. I feel pretty good and my dr does a variety of other blood tests to make sure nothing is missed. Dr and I prefer a low and slow dosing management. I firmly believe it gives my body’s natural healing responses a chance to support the response of Jakafi. Remember, our types of blood cancers are chronic and must be managed as such for the long haul.
Last October, my bloods showed a blip in blood calcium levels - it had gone from 7.5 to 10 in 3 months. Further testing has revealed hyper parathyroid disease and I am currently going through scans to find out how many of the 4 glands are malfunctioning. Again, I can’t tell you how important a listening doctor is to quality of life.
Do you have the reports on Jak1 vs leptin? That is a relevant connection. Leptin was the target of the prior generation of weight loss drugs before the new GLP-1 agonists. All these are supposed to be appetite suppressants. Implication is Rux acting on leptin would increase the hunger signal.
There is this report n=2, I have not read all its details, but they implicate the general effects of Rux; :
" the average gain for those (MPN) patients was 12% of pretreatment body weight,"
"Weight gain occurs regardless of pretreatment body mass index (BMI), suggesting weight gain is not solely attributable to resolution of MF symptoms (e.g., early satiety, abdominal discomfort) in cachectic (too low weight) patients"
"These results suggest that weight gain secondary to ruxolitinib may be related to changes in whole body energy expenditure."
This plot shows energy output goes down but regains its pre-Rux condition, this contradicts there conclusion. It goes to just 6 months.
Here are 2 articles: the first is from a functional health perspective. In one paragraph, it mentions how leptin functions in our bones. Remember, our bone marrow can have different types of mutations. rupahealth.com/post/how-to-... . The other - ncbi.nlm.nih.gov/pmc/articl... from NIH is a more clinical paper about leptin and its effect on various blood function - eosinophils, basosinophils, and inflammation in general. It is a longer read but it struck me how many blood variances and mutations are part of MPNs.
I too have put on weight 10 kilos in about 9 months. I haven’t been eating more actually less and I walk! I have no idea why and I can’t seem to budge it. I have actually gone out and bought clothes a size larger.
So I hear your pain😂 I was slim before I was taking jakavi and don’t look that bad but I too feel very uncomfortable
The different answers here are really interesting. There seem to be a variety of reasons why people might gain weight on Jakavi.
In my case, I had increased appetite and didn’t really feel full after food for the first few months. I gained around 8kg in 6 months. I feel though things have settled a bit. I’m still trying to watch my food intake (so difficult as I love eating 😋) but I am also able again to feel satisfied and full after a meal. On some days, I’m still feeling like I could eat all day. My weight seems stable for the last 4 weeks. I’m just weighing myself now regularly to keep an eye on it and watch my food intake as good as possible.
I was aware of the side effect of gaining weight which was a bit of a con but with Jakavi, I have a real chance to better my symptoms, so it was worth it. Weight is a problematic point though as I’m overweight. That’s my next mission 😁
Rux has a tendancy to increase weight, fortunately it doesn’t make me hungrier and I am on high dose 20+20 for PV.
This isn’t going to be a popular statement but the bottom line is the same as for everyone else who isn’t on Rux, ie to lose or maintain weight there are two ways , one is consume less and or better quality calories and the second is burn more calories, ideally a combination of all three.
When I started Rux I noticed for the first time ever my weight increasing despite my usual healthyish diet and daily workout. That weight increase had to stop so first I trimmed my diet, sugar and refined carbs are for treats only, unless one is a marathon runner sugar and refined carbs will turn to fat. I eat 3 large meals a day, a lot of protein, a lot of veg and just enough complex carbs for energy, I eat more than most people and rarely hungry, protein makes us feel full and good for muscle as we age. Rather boringly recently I cut out my daily glass of wine (bad for tachycardia for me) , I have been amazed how in a few months I lost about 5 pounds.
The second thing I do is do some kind of exercise before meals, before breakfast I climb the stairs in the block I live in 4 times , that’s around 200 stair steps, this increases heart rate and hence metabolism before eating, hence burning calories faster. I have a 20 min fast walk before lunch. Before dinner I walk fast 20 mins and do 20 mins light weights.
When I started Rux my weight went up 15 pounds but now it’s back to 158 pounds and I am 5 foot 11, so slim.
Others may not wish to do what I do but the point of this detailed account is that unfortunately the bottom line is it’s either more exercise or fewer and or better quality calories to lose or maintain weight. There is of course the new weight loss drugs but personally I am very wary of them and long term effects.
I agree with you there Ainslie. It seems like almost everyone here is on Ozempic. I’m exaggerating of course, but not by much! I would not be a candidate at 10 lbs up but like you, would stay far away regardless.
I don’t know but was told by the pharmacist that you will gain twenty pounds and twenty pounds I did gain and I was only on it for a month. Glad it’s working for you, it did not work for me platelets kept rising.
I have been around Rux for a long time and read and listened to everything and 20 lbs in a month I have never heard of, I doubt a Sumo wrestler could match that
its common for platelets to rise initially on Rux but in most cases they come down again , mine went from 600 to 740 after starting Rux and now they are 190
I am on Besremi and it’s a side effect along with 20 others. I decided to eat clean once diagnosed. Nothing processed, no sugar and limited gluten. It’s hard to gain weight eating clean oh and 92 oz’s of water a day. Have you tried the Mediterranean diet and more exercise. I don’t believe the blood in our bodies add weight and water weight can be controlled by diet. Good luck…Hang in there!
I was diagnosed with PV in 2015 and at that time weighed about 170 lb. I was treated with phlebotomy and then HU, which I dropped in 2022 after I got skin ulcers. During those seven years I was losing weight, settling in at about 165. I started Jakafi in August 2022; my blood numbers have been stable but after an initial small weight gain, I noticed that my weight started to drop again, down to near 160. My MPN specialist recommended that I increase my Jakafi dose from 10 mg/day to 15 mg/day (10 am, 5 pm). I've noticed some weight gain, but so far I haven't gone above 165. I hope the weight will now stabilize but I'm watching it closely.
Hi. I too had weight gain with Jakafi.Most people do, sadly. I suspect that it acts on the weight ‘set point’ we have. That is the system that keeps most people’s weight remarkably constant without them needing to adjust food intake to balance output. (Gets fooled by high sugar etc.) Not a moral failing to gain weight, but is a nuisance.
Yeah, it’s funny because interferons are known to be a driver of GI issues but you don’t hear so much about it for some reason. People tend to speak about the mood disturbances etc. I have read a bit from others when I posted with my issues with Besremi on this site, and it is of course, listed as a side effect. For the 5 years I was on, ( 3 on peg and 2 on Besremi), I suffered horrible diarrhea and stomach upset. Interfered with my entire life. Work, social, relationships, etc. I really cannot believe that I stayed on it for five years, but my numbers were so great. Looking back on it now, I was nuts for doing that. I am beyond pleased that I don’t have those issues on Jakafi as truly it was a nightmare. But now if only I can fit in my jeans. 😬🙄😊
Don't forget the autoimmune issues on IFN too. Same here though, I had great numbers with it. But low weight I wrote about above remained a problem on IFN. Rux has well fixed that.
? That is odd. Not sure what you are looking at. In my “ official” papers, it is the fourth side effect listed. You could also just google side effects of jakafi and you will see it all over the web. Sadly. 😒
Oops! Sorry James. As we were talking about earlier, it seems that the majority of focus with Besremi is on the mood disturbances. And rightly so. But yes, I’ve seen several motility specialists now that have told me that interferon is a known driver of G.I. issues. When you google interferon and diarrhea, G.I. upset, etc. you can see this. There has even been instances of serious colitis that were directly related to Peg. You are correct though that the majority of people don’t seem to have this though. I had to post on a few message boards to find people that were suffering with it as I was. Guess I was just lucky. lol My case was pretty severe, but resolved completely when I got of it. So many people seem to do well on Besremi. I just wasn’t one of them and stayed on it way too long.
Symptoms may include abdominal pain, bloody diarrhea, and fever. Discontinue BESREMi in patients who develop these signs or symptoms. Colitis may resolve within 1 to 3 weeks of stopping treatment.
I also have had a huge weight gain in a very short space of time. I was on Peg but progressed from ET to MF and my consultant changed me to Rux. I am in my 80’s and unable to exercise due to my Afib which makes my heart race. I take Digoxin for this.
You may think it should not matter when I am over 80 but like you Miriamusic, it does. I have always been quite slim and although I am grateful for being prescribed with Rux, I am very anxious about this huge weight increase. I have never been a big eater and eat to live rather than live to eat.
Understand your feelings completely. Rux is a lifesaver but the weight gain is depressing.
I was diagnosed either ET in 2005 and took HU for many years until I developed a leg ulcer. I then changed to Anagrelide which did not suit me at all. Busulfan was the next choice but it did not do the job without taking all my other counts too low.
Finally, I went on to Peg which I felt suited me well. (This was after many years with ET). I stayed on Peg for about two years and then suddenly my prolific platelets accelerated. I began to get night sweats and was sent for a BMB. This is when I was diagnosed with MF. I changed to Rux and feel fairly well. The main problem is the huge weight gain. 6 months ago I was 9st 4ozs. I am now nearly 11 stone!
As I have said before, I am not really interested in food and certainly do not over eat. As I have Afib, I am not able to exercise much. I get very fatigued and shaky if I over exert myself.
No idea how to control the problem but hope I have answered your question.
That is a lot of treatments. Good that Rux is helping.
I relate to limited exercise options, in my case the Sjogrens. It's clear from the responses that appetite is not necessarily the culprit. Best I can do is eat the same but less of it.
Hi, I have been taking Ruxolitinib for nine years. I gained weight fairly quickly after starting Rux. And initially my weight increased by about 10%.
I was very poorly with gastritis 2 years ago and lost weight but have put some back on.
The weight gain caused by Rux seems to be something to do with the way fats/lipids are metabolized.
Rux can also cause constipation and managing this effectively is really important. I take 1 dose of Laxido dissolved in water at bedtime. This keeps my system performing regularly every day.
Laxido is ok to take long term 'cos it is not a typical laxative. It is a polymer which helps the body to retain more water in the gut rather than losing it via urination. So the stools are soft and bowel motion is relatively easy.
However, you may have to adapt to some weight gain .... I have, but just manage your diet to keep the gain to a minimum.
This what I've learned along the way. I hope that it helps you.
Yes I agree. We just have to deal but I am so appreciative of everyone’s diet tips and strategies to possibly combat the weight gain. As we know, being overweight is not good for us either. Sigh.
I mostly follow a Mediterranean style diet and try to stay away from processed food as much as possible. But it's not easy and sometimes a naughty treat is good for the soul!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Weight gain on Hydroxyurea 
ruxolinitib and weight gain
Tapering off Jakafi
