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Xyrem = No Appetite?


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#1 wisher

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Posted 28 July 2011 - 09:15 AM

I've been on Xyrem for about 6 weeks now. I'm feeling loads better in the sleep department, and I've even lost about 15 pounds! The part that worries me is that I just have NO appetite. I just plain forget to eat (it's kind of a blessing that I have to take PCOS meds twice a day, with food, cause it forces me to eat). Sometimes my stomach will get really grumbly and I'll eat something, but usually I just don't eat because I'm not hungry. Sometimes I'll even attempt to eat lunch but only get a few bites in before I give up on it because I'm just not interested in eating.

I mean, I'm happy that I'm losing weight, but I am concerned about my food intake. I've actually been trying to eat MORE because I feel like I'm losing it too quickly. I do take multivitamins, at least, since I'm obviously not getting much nutrition from food these days.

The thing is, I have a feeling my doctor is going to want to increase my dosage because I've still had some cataplexy (which is the reason she prescribed Xyrem), but I'm worried that it will kill my appetite even further.

Has anyone else experienced this? Can I expect it to increase if my dosage increases? Any suggestions for what to do besides just force myself to eat more?

#2 NarpocalypseNow

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Posted 28 July 2011 - 11:23 AM

When I first started taking Xyrem, I lost about 30 pounds in 45 days or so. I went from about 180 to 150. I'm 5'11, so that was a little more weight than I wanted to loose. I attribute a few things to this. First, I could no longer eat a snack (bowl of ice cream, etc) before bed like I used to, or the Xyrem would not work. Second, I think I was actually getting rest, which maybe leads to natural weight loss?
I don't recall having a lack of appetite, but it's been a couple years since I started Xyrem. I certainly don't have a lack of appetite at this point!

Just thought of something else. Before Xyrem, I hated drinking water and lived on soda. Maybe 4 or so cans/bottles a day. Immediately after I started Xyrem, I started to CRAVE water and completely stopped drinking soda. That probably contributed to my weight loss as well. A couple years later, I rarely drink soda and drink water with every meal and throughout the day. That was an odd, but welcome change for me.

#3 wisher

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Posted 28 July 2011 - 12:51 PM

Yeah, I've read that Xyrem awakens some sort of metabolism mechanism, which also contributes to the weight loss. And as for drinking/craving water... I can understand, considering you're drinking liquid salt twice a night, lol!

Okay, well, perhaps this will pass, then. Did the weight loss just abruptly stop, or taper off, or what happened?

#4 NarpocalypseNow

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Posted 01 August 2011 - 11:59 AM

Yeah, I've read that Xyrem awakens some sort of metabolism mechanism, which also contributes to the weight loss. And as for drinking/craving water... I can understand, considering you're drinking liquid salt twice a night, lol!

Okay, well, perhaps this will pass, then. Did the weight loss just abruptly stop, or taper off, or what happened?


It seemed to taper off. I do have a healthy apetite and feel the need to eat every couple of hours. Every now and then I drop a couple pounds and seem to gain it back eventually.

#5 utmost

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Posted 02 August 2011 - 12:05 AM

It seemed to taper off. I do have a healthy apetite and feel the need to eat every couple of hours. Every now and then I drop a couple pounds and seem to gain it back eventually.

This has been a benefit to me! I love it! My weight had gone up 50 lbs since I had my kids. I was so tired all the time and really grateful to be dx after a lifetime of not knowing. The rest I get from xyrem seems to have changed many things, including eating to stay awake. I know getting too thin might be a problem for some, but just saying I am happy.

#6 NarpocalypseNow

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Posted 02 August 2011 - 03:23 PM

including eating to stay awake.


I forgot about this. I would snack almost all day long at work just to keep myself awake. After X, I rarely eat snacks at work.

#7 jgingerale

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Posted 04 August 2013 - 10:12 PM

Has the weight stayed off or do you gain it all back over time? I started X a week ago.

#8 wisher

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Posted 05 August 2013 - 10:28 AM

Has the weight stayed off or do you gain it all back over time? I started X a week ago.

 

It stayed off. I had to try all kinds of weight gain tactics to gain some of it back, and it worked after a while, but I had to keep up with it or else my weight would drop again. However, once I stopped taking Xyrem a few months ago, I've very easily (too easily, I might complain) gained some of the weight back.



#9 collegewriter

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Posted 05 August 2013 - 01:35 PM

I forgot about this. I would snack almost all day long at work just to keep myself awake. After X, I rarely eat snacks at work.


This was my experience too! I would eat even a two-foot french baguette bread throughout the day to stay awake. Then when I got my diagnosis of N w/ C and started Xyrem, all of a sudden I started losing appetite. I really need to do some research on why this occurs.

#10 DeathRabbit

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Posted 06 August 2013 - 10:42 AM

I really blame the salt. It's a shame they won't just let PWN use actual GHB instead of the Sodium Oxybate. I think at least half of X's side effects come from the damn salt which was just added to make it harder to slip in someone's drink, though GHB itself isn't a really good date rape drug because it already had a distinctive flavor IIRC. I just think it's ridiculous it is schedule 1 because by definition, schedule 1 means the drug has no medicinal value, but obviously, the existence of Xyrem makes that patently wrong.



#11 needbetterlife

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Posted 30 August 2013 - 11:02 PM

I've seen some say it increases appetite others less. Me it increased my appetite just a little



#12 Mmartens3

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Posted 31 August 2013 - 04:17 PM

I have been on xyrem for a few months and I have no appetite most of the time. I went from 130 lbs to 106 lbs. I have been having episodes of anorexia. Sometimes I am not hungry but sometimes I am hungry but refuse to eat anyway. My husband is constantly trying to force me to eat. I think it is from anxiety though because it has happened before I was on xyrem. This week I am back up to 112lbs. I am going to see a counselor for my anxiety next week.

#13 jennel

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Posted 12 September 2013 - 12:48 PM

I could hardly eat the first month-6 wks on Xyrem. Have some appetite now but my body just refuses to lose weight. I actually think something is messed up cuz I am very overweight despite a low calorie intake. C'est la vie. Problem for me is that I start to really get that I "want" to eat, not I "have" to eat feeling just as it's time to stop eating for my Xyrem dose. But I didn't have much of an appetite before Xyrem.