I am an active 72 year old running 4 times a week and weight trains twice a week. I have gained 5 lbs since on Hydrea the past 2 years and no matter what diet plan I have tried the weight will not come off!!!!!!! I have PV
Has anyone experienced this?
Thank you
Hi Sunnylesser, I have PV too and am on Jakafi 20mg 2x daily. I lost a lot of weight before diagnosis and it started to show, my being tall and lanky to boot. I’ve gained 5kg since being switched to 20 mg from 10mg, and didn’t t much like that (vanity!), and am finding it hard to not put on more (Jakafi seems to make me constantly hungry), but am managing it with smaller portions at meal times, and eating only at meal times, and watching food content (sugar and fats).
Sound like your 5lb over two year period shows you’re keeping it in check and your exercise regime is a bonus towards that. It’s not always any specific diet that helps, just being careful what and when you eat.
Hope this gives you some guidance. Good luck.
I am on high dose Rux and there is a tendancy to put on weight, however I don’t let that happen, I eat 3 big meals but avoid sugar and refined carbs unless holiday, I eat plenty protein and veg and healthy fat and a little complex carbs at each meal.However the thing that surprised me most is if I do some aerobic type exercise before breakfast it makes a significant difference, I lose weight easier. I do just 5 minutes of stair climbing so plenty of puffing and fast heart rate, it must speed up metabolism I assume. I also keep active during the day and work out a bit in evening but it’s the pre breakfast one that made a bigger difference.
I am female, 77 very active, lots of stairs, on 500 mg. HU for one year, dx is PV. Lost 10 lbs. when struggling for a dx, and LOVE the way I look. Feel terrific. My problem (which I hesitated to ask this group about, because so many are dealing with horrific symptoms) is that I have a fabulous appetite. I honestly go to bed hungry. Could eat anything, any time. Going to my world renowned specialist at MGH in September. (She weighs 85 lbs. soaking wet, and is trying to save people's lives. I hesitate to bring up this problem. She will just say eat a balanced diet and keep calories under control. I go by what Angie Dickinson (Very old actress) said. If your weight goes up don't eat or drink until it goes down. Also if your weight is up consider it as serious as if your temperature was up. So I guess there is a fat person inside me dying to get out. I don't want to have cancer AND be fat! Gardening working hard outside and drinking lots of water.
5lb over two years isn't very much. When I was on Hydroxycarbamide I gained then later lost weight. I know why in both cases and I'm sure the medication had nothing to do with it.
I'm obviously not qualified to give advice but low carb worked for me. Also I have just finished a really interesting book - Ultra Processed People - which explains, among many other things, how ultra processed foods can have a very bad effect on health.
Eat real food, alcohol contains lots of sugars or carbs depending which drink so consider it dessert and limit it accordingly. If eating bread, buy an expensive high fiber sprouted grain bread ( usually found in the freezer section of stores) and keep it there. Take out the frozen piece or pieces for breakfast and toast or make a toasted sandwich for lunch. Many times we need the push of the fiber to make the bowel movements. Not all fiber is equal. The combination of the quality fiber and all the water we drink can certainly help.
My two cents. Good luck. 😎
thank you for responding !
You are welcome. All the best to you ❤️
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