Hydroxyurea and weight gain

[Maanganaari]

Has anyone experienced disproportionate weight gain after taking hydroxyurea for essential thrombocythemia?

[ramnik]

I have been diagnosed with PV in 2018 and am on 1000 mg daily hydroxyurea since then. My weight has increased from 74kg to 83 kg now. but it also could be due to lesser exercising as it leads to fatigue. my other blood numbers are in control due since then. i dont know if this is helpfull.

[Threestreams in reply to ramnik]

Hello .. I am interested in the weight gain when on this medication.. can anyone tell me where to look for more information ? Thanks . I am on it and want to work out how to combat this weight gain ????

[Aquinas]

Yes, most definitely ! You have my total sympathy, indeed empathy. I think it is very common with this medication. I hope that you can tackle the issue successfully with perseverance. Best wishes for the New Year.

[Oscarsboy]

Unfortunately yes. Weight gain has certainly been an issue with this medication.

[Planting]

hi

Yes I have to look at the positives of hydroxy because weight gain is a negative but it doesn’t seem to affect every one. I had to come off it in September for 7 weeks whilst I had chemo radiation. I lost perhaps 7 lbs on that but when I went back on HU the weight piled back on . I’m very body conscious but have learned to appreciate what it can do for me rather than what it can’t’ I’ve been on it for 7 years so some weight gain may be due to ageing!

All the best with your journey and I hope HU if you carry on with it does its job as it has done for me

Planting

[Sunbathing]

Hi

I have ET also and on HU for 18months

I have gained 7kg !!!!!

It’s definitely 💯 the medication 💊 I’ve increased my exercise and eat a healthy diet can’t seem to shift any of it

It’s so frustrating

Good luck with trying to lose some weight but I’m really struggling with it 😔

[Conneryfan1]

Yes, a large weight gain. Until recently I was taking pregabalin for the pain which also has the side effect of weight gain. That plus less able to move and exercise. I am hoping for some weight loss now that I have stopped taking pregab, and am also fasting and low carb eating.

[IsabelleHo in reply to Conneryfan1]

Hello... I was also taking pregabalin and the weight gain was crazy even though I exercise and eat sensibly . I stopped pregabalin 3 weeks ago and I've started to notice a few changes, most notably not being as bloated as I used to be. I know I won't lose the weight overnight, but I do expect to get back to a normal weight within the next year.

[MissLesley13]

Hi I have put weight on since taking hydrea.

[April-May]

I’ve been on 8 x500mg Hydroxy per week for ET since December 2021 and lost over a stone initially, which has stayed off mainly due to loss of appetite. Trying to be as fit as I can, I now eat vegetarian, organic where possible, and definitely feel much better for it. I do eat eggs but no other dairy and found cutting out wheat products also helped a lot. Tiredness is definitely the biggie so I make a point of never napping in the day then I crash out for a good 8-10 hours at night. I guess we are all different and need to find what works best for us. Hope things settle down for you.

[Bluetop]

I have been taking hydroxycarbomide for 8 years for PV. I have not experienced any weight gain but am fortunate that neither do I suffer from fatigue, so am able to remain active.

[johnnyjumpups]

Yes! I have been very frustrated with the weight gain. My hematologist's NP says HU is not to blame, but I know it is. I have not been able to figure out how to lose any of the weight.

[dogsandhorses]

I lost a lot of weight due to gastrointestinal issues on Hydroxyurea. I am on Jakafi now, and I am gaining weight on that. I have ET as well.

[mhos61]

I’ve been on hydrea for nearly nine years with no change in weight. I only take 5x500 mg weekly, and remain fairly active.

[Sunnylesser]

absolutely yes! I wrote about this before . I am a runner and have always been on top of my body weight and muscle weight for years. I do DExA scans yearly as well. Once I was diagnosed and placed on Hydrea I could not get 7 lbs off no matter what I did .Finally I started intermittent fasting and it took nearly 7 weeks to move the scan a few lbs! Without a doubt for some people there is a correlation!

I have decided to accept this not fight it. Keep exercising and understand it’s a side affect of the medication.

[EBFinney]

yes! I had to discontinue Hydrea for 35 radiation treatments and lost 7 pounds. It’s come back since I’ve restarted the med!