Hello —my 17yr old daughter started Humira in July of 2020. This was after a year long search for a dr to properly diagnose & treat her for Crohns symptoms she started having at age 15. She was previously put on Prednisone which made her swell up like a balloon & didn’t help her at all. So we were thrilled when new dr said Humira would make her feel like a new person & not blow up. Well here we are 7mo later & while she feels much better she has gained 40 pounds!! She has ALWAYS been a thin person & is VERY active in sports so it is not lifestyle. She is devastated & feels uncomfortable and I understand why. She’s a teenager! We expected 15-20lbs tops since she had lost weight being sick but this is way above & beyond her normal weight & it’s not stopping! I have found blogs & research that has stated TNF inhibitors do in fact cause weight gain in many patients. Many patients were gaining 60-80lbs. This cannot be healthy either. Has anyone else dealt with this? Thanks
Humira & weight gain
- Thread starter Tb27
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Ds has been on biologics since age 8
Remicade -8 months
Humira over 5 years
And Stelara since 2017
He is 17 now
The problem with crohns kids is if she was in a flare for two years that normal “thin” was probably not her normal weight
Flaring intestines don’t absorb nutrients and inflammation burns a lot of extra calories
Add in flares can delay puberty
Which all equals healthy weight when inflammation is healed
It’s not the biologics
A lot of kids /teens have a hard time seeing themselves as a normal weight and not thin
it does even out
Ds gained with steriods
But evened out a year or so afterwards
So it may be just that
He is 158 lbs and 5’10”
On steriods when he started Stelara he was 168 lbs and 5’8”
But that took 1.5 years off steriods to even out
anyways it’s not the biologics causing the weight gain
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@crohnsinct
Remicade -8 months
Humira over 5 years
And Stelara since 2017
He is 17 now
The problem with crohns kids is if she was in a flare for two years that normal “thin” was probably not her normal weight
Flaring intestines don’t absorb nutrients and inflammation burns a lot of extra calories
Add in flares can delay puberty
Which all equals healthy weight when inflammation is healed
It’s not the biologics
A lot of kids /teens have a hard time seeing themselves as a normal weight and not thin
it does even out
Ds gained with steriods
But evened out a year or so afterwards
So it may be just that
He is 158 lbs and 5’10”
On steriods when he started Stelara he was 168 lbs and 5’8”
But that took 1.5 years off steriods to even out
anyways it’s not the biologics causing the weight gain
tagging
@crohnsinct
Appreciate the response but I have found way to much medical research to say they do in fact cause weight gain. This is not “normal” weight gain from being sick prior. She has always been long & lanky. The whole family is-LOL We already were expecting 15-20lbs at the most for that. She looks puffy & bloated like she did on steroids. So much that people have commented. This is more than puberty (which she went through before her diagnosis) & gaining her “true” weight back. 40lbs & counting in 7mo cannot be normal. She is not on stroids only Humira. Thanks for you input. Hope your son is well.
crohnsinct
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How much of that weight gain was steroid weight? Steroids are infamous for puffy weight gain and it takes a really long time to lose that. How fast was her taper? When did she stop the steroids? Then add the healthy weight she will gain from healed intestines and it really takes a while for the unnatural steroid weight to go.
I have never heard here on the forum or from anyone I know that anti tif agents caused unhealthy weight gain but anything is possible. I do agree with MLP that our kids are sick for years before we even realize what is going and not gaining weight is the first thing that happens, then losing weight etc so by the time we get them diagnosed we are looking at a not so normal weight. But anything is possible and if there is "puffiness" going on it might be worth speaking with your GI as un natural weight gain is not a side effect of Humira and there could be another disease process or damage going on with another system that needs to be checked out.
I don't think I could compare my kids weight gain because they were younger and also grew but one girl gained 20 pounds and the other 45.
I have never heard here on the forum or from anyone I know that anti tif agents caused unhealthy weight gain but anything is possible. I do agree with MLP that our kids are sick for years before we even realize what is going and not gaining weight is the first thing that happens, then losing weight etc so by the time we get them diagnosed we are looking at a not so normal weight. But anything is possible and if there is "puffiness" going on it might be worth speaking with your GI as un natural weight gain is not a side effect of Humira and there could be another disease process or damage going on with another system that needs to be checked out.
I don't think I could compare my kids weight gain because they were younger and also grew but one girl gained 20 pounds and the other 45.
crohnsinct
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Hmmmm. I would mention it to PCP and GI....maybe thyroid or something else. Couldn't hurt to get it checked out. Good luck and keep us posted!
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Have you counted her calories for a week or two? Sometimes we don't realize how much we eat until we add it all up. When my Crohn's was more active I could eat 5000 calories a day and not gain weight.
We have not counted her calories but are definitely paying extra close attention. She is a VERY picky eater (hates bread & any sandwiches) doesn’t drink pop or sports drinks. She is a teenager and likes pizza & ice cream but nothing in excess plus is active in sports 4-5 days a week. We spoke to her dr & he wants her to see an endocrinologist to rule anything else out before we discuss switching meds. Hoping to get answers. Thanks
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Best of luck, it's very sad to see kids have to struggle with diseases like this.
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Use my fitness pal app for a week
It is free and lets you add exercise so you have a better idea where she is at
It is very surprising on what calories are really at
We have done this more than once for ds
When he was first sick and not gaining weight
Despite consuming 2600 -2800 calories a day at age 7
docs will ask for the data
It breaks things down to nutrition as well
It is free and lets you add exercise so you have a better idea where she is at
It is very surprising on what calories are really at
We have done this more than once for ds
When he was first sick and not gaining weight
Despite consuming 2600 -2800 calories a day at age 7
docs will ask for the data
It breaks things down to nutrition as well
