I am constantly working on my weight. With this fatigue issue it is hard to stay active like I was before. It seems that I have to force myself to get out and hike or go fishing or any activity. I do feel better when I get out of the house and do something. I do enjoy my nap time.

I would agree with Jim, that staying active is important. I did find that I recovered weight loss after I went on Jakafi - I had dropped about 20 pounds or more in a short period before I was diagnosed most of which came back after using Jakafi. I have found it very important to stay active for fear I would continue to gain weight and hopefully maintain health. Although some days it is difficult to push myself. Rick

I was diagnosed with JAK2+ Essential Thrombocythemia and Budd Chiari Syndrome in May 2020 while in hospital for liver failure. I lost a significant amount of weight at the time and everything I read said weight loss was common with ET. I started noticing weight gain when I started taking Hydroxycarbamide 2 years again which I take daily along with several other medications. I have been heavily symptomatic since diagnosis so I have an impressive medicine cabinet!

Like others above, the chronic fatigue (which was one of the symptoms that led to my diagnosis) is a real killer and it's hard to find the motivation for exercise. I walk and swim now rather than run and weight train like I did in the past. I share your frustration - it can be very demoralising managing the symptoms of ET and the side effects of treatment, especially when you feel like you're trying your best but not getting the results. Have you seen an MPN specialist? I say this because I've found my specialists to be rather dismissive of my weight gain and its link to ET and my chemo drugs. ET is a complex condition and I do feel that we as patients often know far more than our care teams about the wide range of symptoms and how individual these can be between those with identical diagnosis. It might be worth asking for a referral to a dietician/nutritionist too, just to see if they have any advice.

Hang in there 🙂

Since I started Jakafi 4 years ago, I’ve gained 30 lbs. I always read that people taking this drug loose weight. Well, that’s not me. No matter how careful I am about making good choices, it still happens. For 2weeks I had a URI and ate soup and herbal tea. Still the same. It’s frustrating

Hi, I'm afraid weight gain goes with ET. No matter how hard I try, the weight stays on. I read that with ET and PV most people become overweight. I'm sure I had ET in 2012 before being diagnosed in 2021. I've gained 25 lbs that started in 2012....stay well and happy!!!