As someone who is taking Ruxolitinib, I found this paper's frank admissions rather interesting seeing that the funding is coming from the manufacturers of Ruxolitinib (Jakafi). It is definitely worth a good read, as it explains how taking Jakafi can and generally does alter our metabolism, with weight gains in >5% of patients. This very might impact upon our Cardio' health if we do not act to to stay healthy via exercise & diet during our Jakafi part of the MPN journey etc... In my view...
Interested in any feedback from others of course...
Hi Steve..I take Jakafi and yes, this does do the weight gain game. I went from Hydrea to Jakafi due to the side effects and I noticed that even though I no longer had the severe side effects I did gain weight. Went on Noom..track my meals, which I eat salads most of the time, and of course track everything. Nope still got the pounds. My hematologist has put me on one 5mg of Ritalin for my energy which has helped, and it is helping with weight loss..down two pounds , which is a lot for me. That is a side effect of Ritalin, weight loss. Maybe have a chat with your doctor about this? Don’t worry, the weight seemed to plateau on the Jakafi. Please let me know how you are doing.
Yes, I am aware that that Jakafi does have a weight gain side-effect, and that keeping the weight off requires loads of exercise in my case...Having the right dietary regime does help too... Loads of salads are great, so too is fruit, vegetables, and no alcohol or even meat in my case... I am a Pescetarian anyways... Love my seafood!
This article, in my view, is more of a warning about the potential dangers to our cardio' health with such large weight gains possible... Hence, all the more need to maintain a consistent exercise regime and a healthy diet in order to combat and counteract those side-effects...
Anyways, nice to meet you Sheryl... stay happy & well...
Hello all! I have been on Jakafi for 6 months and put on 15 pounds. In July, I had PE's in my right lung, so I am now taking Eliquis, a blood thinner. I have PV and ET for the last 6 years and I now am so fatigued that I am to tired to exercise or even walk. The fatigue, weight gain, and constipation are terrible and just wondered if anyone has any advice. With the numbers coming down some, you would think I would have more energy and oxygen going to my body.
Sorry to learn that you are struggling a tad w/ your weight... Actually, and in my case... much has changed since this original Post was made somewheres back in January (?)
My weight has continued to fall, however, I believe that the biggest contributor is probably my dietary regime. Today, I am practicing a vegan, plant-based diet, and I also do daily 'Intermittent' fasting...
Between my exercise, and my diet, my weight levels & BMI have dropped back into the normal range I use to have many years ago... Diet plays a larger role than most of us might assume, I guess... And it can take some time to adjust to the changes...
Sadly, for me, my fatigue levels have never been good... but I just keep trying to push through them... some days... I really cannot, and on those heavier days, I simply go back to bed... however, those days are more the exception today...
Just keep chipping away at it, and be patient w/ yourself, and slowly you will start to succeed if you really wish to, in my view...
Thank you Steve! Your words of wisdom are so encouraging and I am sure fitness and diet are the key...at least the few things I can control. I set my alarm every morning, but some days I just have to keep snoozing because I am so fatigued, even after sleeping at night.
Sounds like you have been on quite a journey yourself, and you are an inspiration to me ! I am going to try harder and put mind over matter. The trouble breathing has really got me down and changed my quality of life. My pulmonary dr. put me on an inhaler Monday so hopefully the breathing issue will get better. I'm gonna try my best!
My pleasure, and thank you for the glowing compliments... (not so sure I deserve them though...)
Some days, rest is best... and there really is nothing else for it, in my view...
However, even on those other days, my fatigue is still there, and I simply have to drag myself up, and really push myself to get out there and do stuff... I'd like to say that it does actually get easier, however, I am not entirely sure that statement would be correct... (?) It's often about the same really, and I just have to push myself.
For instance, I found a new hobby, (cycling), when I first started I could barely ride 3-5km. Now I ride 100s... And I have just booked in a huge Ride for my Fundraiser for Research into MPNs in Australia... The Ride is already Booked for November, and I will create a new Posting about it all shortly.
So now I MUST train, in order to Ride these really long distances etc...
Cheryl, all of this has taken me quite some time to achieve, and I learned that I MUST be more patient w/ myself, (& others too...), in any event... If you just keep hanging in there, (chipping away at the bigger picture...), you will get there too...
And don't ever be down on yourself when you slip backwards, we all do... Just smile, and get back on that horse and ride girl...
Take it slowly, and build yourself up over time... In no time at all, you will be chuffed w/ the results I am certain!
Thank you for the advice. I have put on weight, a big, round belly, 3kg. I have tried to diet but it leaves me dizzy with vertigo and seems to do absolutely nothing to reduce the weight. It is helpful to know why this is happening. I eat salads and fruit every day. I am out with the dog walking daily also, but I get sleepy in the afternoons and cannot manage much more exercise: I am 80 next month. I will keep trying and I will talk to my doc. about Ritalin. I am due a thyroid test and I will see if I need more Levothyrox (thyroid ruined be fib. meds.). Frustrating: I have had to buy what they call 'relaxed' clothing, can't bear anything tight.
Sounds like you're doing all you can... Make sure you take some supplements if you do start dieting, & maybe try to see a Nutrionalist, who might have worked w/ cancer patients etc...
I am only 62yo, but still cycling & remaining vigilant about my diet... Occasionally I stumble, then bounce back up & do it all again etc...
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Jakafi and H/H PCV 
