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Weight gain on Risperidone - any experiences?

12 replies

Lilka · 09/10/2013 19:52

My 17 year old daughter takes Risperidone, for her issues with serious anxiety and physically/verbally aggressive behaviour (she has CPTSD and mild learning difficulties and a couple other things). She started on a lower dose but over time this has increased, since June she has been on 1mg daily

It's really really helped her, she's had much less aggressive behaviour, more able to focus on things and talk things through and most importantly she's much less anxious and hypervigilant.

However, as the title says, she's now gaining weight. She didn't gain anything when she first started, but I think that was just because it was a lower dose. She had a bit of weight gain when it was upped before, and now it's on 1mg she's most definitely put on lots of weight. She was about 10 stone in June when the dose was upped and is now 11 stone, but I assume she's just going to keep gaining unless something changes. She doesn't seem to be worried about her weight at all right now, which is great, but I'm pretty sure she will get upset eventually if she keeps gaining, and then might refuse the medication etc

The thing is, she has food issues (going back to being very underfed, underweight and malnourished until she was about 4 and a half). Long term problems with needing food around her to feel safe, comfort eating and binging, hoarding food, wanting control over food etc. So a diet is not going to work. She doesn't comfort binge through extreme anxiety so much now (I'm talking like getting into the fridge and eating literally anything and everything, until physically sick then perhaps eating some more), but she still finds great comfort in eating some extra food (like a whole fruit basket plus several multipacks of grain/biscuit bars...or 10-20 bars of chocolate) when particularly anxious. However this drug has increased her appetite so even though she is not bingeing so much, she is eating more food at every meal and snacking more.

So I've been encouraging more excercise to try and curb the weight gain. She's always been very active (which I assume is why she has never been overweight for her age even with lots of bingeing). She will spend hours on the trampoline, or on her bicycle, and my best friend (who is pretty close to DD) has just started taking DD jogging/cycling with her several times a week now, which DD likes.

So, I was wondering if anyone here has had issues with weight gain on Risperidone (or similar drug) and is willing to share (I do totally understand if no one wants to talk about weight, it's a sensitive subject) whether it was possible for them to either slow the weight gain, or stabilise weight (or even lose some) by excercise alone, or only by excercise+adjusting food intake? Or not managed to control weight at all. I'm wondering if it's possible for her to not put on much more if she does a bit more excersise, which she really enjoys, but so far the few people I've talked to irl have either had no weight issues, or couldn't control weight gain even by trying to diet and excercise more. I could try very big portions of low calorie food so she gets same calories without it looking like less, but she still might feel hungry and just snack more. Any other perspectives or experiences? What helped the most?

OP posts:
mycatunderstandsme · 10/10/2013 15:21

Hi Lilka,
My DD is taking Olanzapine for bipolar disorder and is also 17. I believe their age group is most likely to gain weight on atypical antipsychotics and Olanzapine is worse than Risperidone for weight gain.
My DD was on the low end of normal weight for her height when she went on Olanzapine but always had a huge appetite and an unhealthy preoccupation with food due to early neglect[she is adopted]. She had a high metabolism and was busy and active so didn't gain weight prior to starting the drug.

Unfortunately whilst in hospital she managed to gain over 1.5 stone in 3 weeks!! To be honest I was not happy that she was allowed access to that much food to gain so much in such a short space of time but the professionals were not concerned as she was still a normal weight. I have expressed my concern to her Dr as the gain was so rapid but they refuse to help until she becomes obese and I know if that happens she'll never be able to lose it as it will require such a massive effort at that stage.

Since leaving hospital she has not gained any more but has not been able to lose any either and this is only due to a HUGE effort on my part.
We are having to calorie count which we have never had to do before-the whole family is slim. I know my DD cheats as soon as I am out of the way and she goes to a party most weekends so that doesn't help but the rest of the time we are sticking to 1200 calories a day.

I have discussed it with DD and she wants me to take charge of her diet for her because she knows she doesn't want to gain any more weight but lacks the motivation to do it for herself. As soon as we try to stop the diet the weight piles on although she's only eating what she used to eat and then we go back on the diet and she loses it again but she has never gone below the weight she was on leaving hospital. She feels very well in herself so that motivates her to continue with the meds.

Things are obviously more difficult with your DD's food issues but if I were you I'd try to prevent any more weight gain as there is also a risk of diabetes with these drugs.

I think your idea of bulking food out with veg and increasing exercise is good. That is what I do. I use my fitness pal app for my DD which is very useful-maybe you could use it in secret! It doesn't sound like your DD has had the dramatic weight gain my DD had so I would think it may be easier to manage in your case.
Good luck!

mycatunderstandsme · 10/10/2013 15:32

Sorry Lilka I don't think I really answered your question!

Basically my DD was partially discharged from hospital at the beginning of June-5 days at home, 2 in hospital and completely discharged end of July and her weight has been stable since June but as I said only due to a real effort in controlling diet and exercise. If it hadn't been for that I do believe my DD would be obese already.As it is she is right in the middle of the weight range for her height BMI 22.[BMI was 20 when she went on the olanzapine though].

As your DD has gained weight more gradually I'm sure it will be manageable.One thing I tried to avoid for my DD was calories in drinks like milk and orange juice. Just avoiding those helps.

Lilka · 10/10/2013 18:22

Thanks mycat that's really helpful, you have answered my question, and gave me hope that this definitely can be managed

always had a huge appetite and an unhealthy preoccupation with food due to early neglect[she is adopted]. She had a high metabolism and was busy and active so didn't gain weight prior to starting the drug

That also describes my DD very well, her food issues all stem from serious neglect and no food, very active, never seemed to put on lots of weight despite eating more than other children her age (I adopted her when she was 8)

1.5 stone in 3 weeks is something else. That's a scary amount to gain. But I'm encouraged to hear that even that amount of weight gain can be controlled/stabilised, with significant efforts. 1 stone in 4 months (same amount of food) is definitely a much more gradual slope, but you're right, the risks of being overwight/obese mean we need to try and prevent her putting on more weight. I did a BMI calculation for her yesterday, and as she's 5ft 3, at her current weight she's overweight (she was not overweight before her dose was upped) and her BMI is 27.8. If she continues gaining at even this rate, by next June she would be just over 13 stone, which is obese and BMI over 32. I think when I saw that, it really hit me that we really need to change something, she can't gain at this rate any longer.

Also definitely need to be careful with sugar, because of the diabetes risk

I think I'm going to try padding out meals with lots of veg etc, and thanks for the drinks suggestion, I hadn't thought of that. She does like water and no sugar/no cal fizzy drinks (I know, they're rubbish and full of additives, but I can't stop her drinking them) and wouldn't pine after most calorie filled drinks. Except for hot chocolate with whipped cream on top. She just loves it, and we have a Sunday night 'drink hot choc together while doing something fun' thing when she feels up to it. But if she had only one of those a week, and cut out milk/squash/juice in the week in favour of water (I think if I put out lots of water but don't buy any more juice, she won't care and will just grab the water) that would be good.

She has a snack box in her room (which I started when she came home, to try and help her feel safe/secure/well fed), and we can also make sure everything in there is healthy and no chocolate/sweets/biscuits

That said, if she wants something unhealthy, she won't think, she will just go get, and she can be quite controlling with food, so this definitely needs to be alongside lots of excercise, and she will never be able to follow a diet strictly or completely cut out any type of food. Also she's in contact with her birth mum and if she starts meeting up with her again (I really hope not), the likelihood of her birth mum giving her loads of sweets and chocolate and pudding is about 100% Angry

But I will definitely try this and we'll see what happens. She's also expresssed an interest in the gym and dance classes, which is horribly expensive but absolutely worth every penny if it would help her not gain weight

Thanks again :)

OP posts:
mycatunderstandsme · 10/10/2013 20:00

Glad it helped!
My DD was a similar age when adopted. She had done so well got great gcse's etc and it was like a bolt from the blue when she got ill this year. She spent 6 months in hospital and I honestly thought that was it and she'd never come home.

I'm scared about these drugs and the side effects and so am doing what I can to minimise them. The drs however disagree and think I should leave it up to DD but I can't sit back and watch her get heavier and heavier and do nothing about it! I hope one day she might be able to manage on just lithium but she is incredibly well mentally at the moment so imagine she'll stay on the olanzapine for quite some time.

I found healthy eating wasn't enough for my DD and she was still gaining at a slower rate of a pound a week. I couldn't understand it as I lost weight and DH lost loads of weight! In desperation I tried the fitness pal which calculated she needed 1200 cals a day to lose a pound a week. I realised she'd been having more like 1500 a day plus whatever she had when I wasn't there so reduced what I gave her to 1200 and the gain has mostly stopped but she hasn't lost anything overall. 1200 Cals is not much though and I have to try to come up with large low cal meals!
If she's still on olanzapine when she leaves home there will be no chance of her maintaining this weight but that is at least 2 years off!

Lilka · 10/10/2013 20:44

I was scared too. When they first suggested Risperidone, I recognised the name but didn't really know what it was, and I was a bit horrified when I went online and discovered it's an atypical antipsychotic. I sat there thinking 'but she's never had psychosis, why would they use an antipsychotic, this doesn't make sense'

But when I researched further and talked to some people irl, I found several families who told me their children took Risperidone for similar reasons to my DD and that it was really helpful, and that it wasn't only for psychosis/related illness, but great for serious problems caused by anxiety/agression as well. It was talking to other families that made me decide to go for it, as well as a kind of defeated 'well, nothing else has worked, what have you got to lose from trying this?'. I found quite a few adoptive families irl and online whose children were aged from about 11-16 who found Risperidone really worked and made life easier for the children.

It's definitely heavy duty medication - but it's so helpful for DD, I'm really really glad I decided to go for it. I'm much more positive about medication in general having gone through this. The side effects are very worrying, but my opinion on medication is more positive now. Not that I was ever anti-medication in children, but I used to feel quite negative about using anything stronger than ADHD type meds.

Personally I agree with you - if your DD will work with you on her weight, but can't manage it alone, it just doesn't make any sense to leave it to her. Obesity is dangerous and I'm sure would be really upsetting for our DD's, so why go down a path that would inevitably lead to that?

Fantastic that your DD got great grades, well done to her :) It must have been absolutely terrifying when she got ill so suddenly and for so long. For her, was it a case of getting the right medication, and she got better quite quickly once on it?

OP posts:
mycatunderstandsme · 10/10/2013 23:10

It was a case of finding the right medication and unfortunately she was left for 3 months on a drug that didn't work. She was in a psychotic state for all that time.
She became worse and worse as time went on and I think that by that stage the Dr she was under decided she wasn't going to respond to anything even though only 1 thing had been tried.
She was then put on olanzapine and it was like a miraculous recovery which started immediately. I do feel if she hadn't been allowed to get so ill something with less side effects/weight gain could have been tried because now everyone is too scared of destabilizing her. She's had her dose reduced a lot though.
Time will tell but she really needs to try to get her a levels if poss so I expect she'll stay on it through those if she's ok on it.
I have made a complaint to the hospital because if you could see my DD now you would not believe someone could write her off so easily and leave us all with so little hope. I have read a lot about these meds too and am not anti medication but unfortunately my DD has had every possible side effect except the movement disorder ones! It is surprising how many people are on them but olanzapine seems to be the one to avoid if poss!

Lilka · 10/10/2013 23:34

Sorry to hear she has so many side effects. Apart from appetite increase and weight gain, DD now doesn't sleep as much and has dry mouth, but that seems to be it, and that's minor compared to some of the listed possible side effects (I remember just before she started and in the first few weeks, I kept having little panics about side effects and DD ended up saying 'mum, stop asking me how i feel, it's really annoying')

I hope the hospital reply to your complaint quickly (and helpfully, and sensitively). It's awful what you went through, for want of changing the medication a bit quicker.

I've also been surprised by how many people take atypical antipsychotics, especially Risperidone, and was also suprised to find several children on it, youngest about 8/9. Apparently it can also be helpful in Autism and Tourettes.

OP posts:
Lilka · 10/10/2013 23:39

Children with autism/tourettes who have anxiety/anger problems that is, someting funny happened with the keyboard and post button there

OP posts:
mawbroon · 11/10/2013 00:08

My sympathies, this is so hard.

I was on Rispiridone for about a year, but although it stopped me becoming psychotic, I never felt well on it. It didn't make me gain weight, and over the period I was ill, I actually became quite thin, though not underweight.

Then the psych changed me to Quetiapine at the beginning of this year. It works brilliantly, I am really well, but OMG the weight gain was incredible. In the first two months, I gained 2 stones and am now heading towards the 3 stones mark. To put it in perspective, it is more than a third of my bodyweight.

I am loathe to change drugs which is what they psych is talking about, but I am struggling to get to grips with the weight issue. At first it was a really intense sugar craving which has calmed down a bit now, but I am starving the whole time, to the point of shaking with hunger, so I have to eat.

My psych did once mention giving me another drug to stop the cravings, but hasn't mentioned it the last few times I have seen him, I get the feeling that he's trying to push Lithium which sounds like a giant headache.

What I will say too, is that these cravings I have are like nothing on earth. I had pretty strong pregnancy cravings, but they were nothing on this! I would eat anything that had sugar in it - cocoa powder from the tin, jelly cubes, honey or jam straight off the spoon. I have never had any issues with food before, so this is quite disturbing for me.

Sorry I don't have any answers for you and your daughter, but just to know you are not alone.

FeministPixie · 11/10/2013 10:02

i was on risperidone (1mg!) for about 6 months and I gained 2/3 dress sizes (I stayed away from the scales!) in quite a short amount of time. the feelings of being hungry are incredible and it made me quote lethargic and sleepy at the same time. I switched to Aripiprazole (I had a bout of psychosis) because it was messing with my libido/sexual response which I found very upsetting and wasn't working for the psychosis anyway, after that the weight gain stopped. However that one can make you feel twitchy and anxious but it stops the really intense hunger (I would eat bags of carrot sticks and crunchy things like apples as that seemed to be the best way to manage it on the risperidone) but that left me with long term side effects as well after ceasing taking it.

Due to other MH conditions I've never actually lost the weight (I get anxiety issues and find it difficult to leave the house alone) but I have stabilised and been at my current weight for some time now.

mawbroon my cravings were for things like eggy bread and savoury crunchy things. Although that is the time also when I got a serious yen for eggy bread, crispy bacon and maple syrup, so, yea, just hungry I guess. ALL THE TIME.

Lilka · 12/10/2013 15:33

Thank you both :)

OP posts:
CharityFunDay · 14/10/2013 05:54

I quit risperidone (?sp) because of the drastic weight gain. I am still overweight six months later, but nowhere near as obese as I was. The effect on my weight was so injurious to my self-esteem and therefore mental health that I decided I was better off without it. My psychiatrist was unhappy about it, but it was my decision.

I now take Lamotrigine and am altogether happier.

Antipsychotics are bastards for weight gain, because they are basically sedatives under another name, and lower the metabolism.

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