Weight gain on Hydroxyurea

[Cookiebaker]

Has anyone else had weight gain while taking Hydroxyurea? I have been on it 10 months and have gained 10 pounds. When I first started taking the drug I felt so bad and I thought if I ate something I would feel better... however I didn’t feel better and just put on weight . I have really been trying to lose and just can’t lose it. Any ideas ? The holidays are quickly coming and I don’t want to gain any more .

[hunter5582]

HU can cause some GI problems like nausea, vomiting, diarrhea and constipation. Part of the issue is that it can compromise the intestinal endothelium. That in fact happened to me (I am HU intolerant). I have not heard of it causing weight gain. Certainly stress eating and decreased exercise due to fatigue can cause weight gain. I managed to loose over the last 18 months. Made the effort to increase activity level and used an app on my phone (Lose It) to set goals and monitor my calorie intake. Hope that helps.

All the best to you

[WileyFrench]

Hi Cookiebaker -

As the previous person posted, I haven't heard of HU causing weight gain, but a lot of people say they feel quite fatigued when taking it, so that could result in one being more sedentary, burning fewer calories, and on goes the cycle. I'm guessing that the only way to break the cycle, and burn more calories/lose weight, is going to be the boring old usual: start with doing something - anything - every day: walk around the block, then two blocks, then five, then 10 - and cut back on food intake, or change intake to be higher in protein and minerals, lower in fats and carbs. It's tedious, but it will work if you keep at it over a longer period of time.

[Wyebird in reply to WileyFrench]

You’ve hit the nail on the head. Unfortunately for me I’m suffering g with my ankles and can’t walk very far ( haugland syndrome - having op on one of them soon)

So I finding an exercise to suit my body difficult at the moment. Swimming seems to be the only solution and I’m finding motivation to go is getting harder and harder.

[Mallard]

Hi I put on 10lbs too after starting Hu - I remember posting at the time and got lots of responses from others who had put on weight too. I have never really been able to shed it apart from a couple pounds now and then.

[Cookiebaker in reply to Mallard]

Thanks for the post that I am not alone . I walk 8 miles a day on treadmill in winter and Cycle in the summer 20 mile a day weather permitting so it isn’t lack of exercise. I have always been a good exercise person and that hasn’t changed with the diagnosis.

[Wyebird in reply to Cookiebaker]

I g G puns the more meds on the more fatigued I get.

[Helena303]

My weight was lower before I was diagnosed in Nov. 2018 with Et CalR. My iron had been quite low and I’d been very fatigued. My appetite was low too. I had an iron infusion. But after being on 1000 Hydroxy daily I tried hard to put on some weight. Now I’m looking a bit more healthy. I’m not as fatigued as I was over Christmas I looked pale and now I try to push myself more I eat more healthy now. Also push myself to keep active on my good days. I am still experiencing headaches my blood platelets are 560 last 7 months. I’ll speak to my Consultant on 27th. As these headaches come and go. They really bring me down.

[Wyebird in reply to Helena303]

Do you mind telling me what your heamoglobin level was before your infusion? I’ve gone down to 96

[Wyebird]

I too struggle with my weight. I personally don’t think it’s the meds in my case. It’s the fatigue. I’ve always loved naughty foods and have managed to control my weight through exercise. I went through a very bad patch at the start of the year . I’m just so tired that I hit the biscuits chocolate and cakes so much easier than cooking a meal. Then of course I’m unable to work it off.

[Mica11]

I too gained weight, 21 lbs at it's worst. Daily dog walks, Pilates and Circuit training every week, big garden to keep tidy and I am still fighting with the last 7 lbs and seem to have become stuck with it. I have always been able to eat what I like and not gain weight through the years, so this is a new thing for me. Could be many things....age, meds, fatigue etc, but I am not giving up my odd bit of chocolate now and again, it's my reward to myself when I feel I have earned it.

[Cambersand]

I’ve been on HU for two years starting on a low dosage to currently 1.5gm a day.

The first year I lost about 3stone , since I went on to 3 tablets a day for the last 8 months my weight has increased. I’ve put a stone back on in that time. My eating habits have not changed that much.. In terms of exercise, I completed the great north run in September , so I would say I’m relatively active, but my recent weight gain is one that I’m monitoring closely.

[namaof2]

Hello. I am in a FB group and this issue has come up. It seems that gaining weight is a problem for some. I, myself, gained 20 while in it.

[Cookiebaker in reply to namaof2]

Thank you. Glad to hear I am not alone in the struggle with my weight. I really think it is the Hydroxyurea.

[Lifam]

I also joined in other support group"Essential Thrombocythemia Support group" and some members in that group are having same problem. As for myself I've lost the weight that I wanted. Lots of us are in healthy diet like anti-inflammatory diet, eating healthy and exercise regularly, keep hydrated. I agree what hunter said, keep active, all sort of exercise is good for us.

[Sweetones]

Yes, I have gained a lot of weight on it, and cannot lose it!

[MELBS]

Hi Cookiebaker, I was on Hydroxy for 5 years and after 2 years I started gaining alot of weight, and like you I'm not a big eater and always active. But I'm also not that great at drinking water & think when taking Hydroxy you're meant to drink 'alot' of water per day. So that didn't help I don't think! I'm now on Pegsys Interferon & my weight is stable now, not going up anymore.