Remicade and weight loss

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Jmrogers4

Jmrogers4

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Decided to start a new thread on this so it doesn't get lost as I think this may be another long journey of trying to figure out why.

Results are in.... and they are great, Remi levels are good, no antibodies present. So it once again leaves us scratching our heads about weight loss.
In the meantime the plan discussed with his GI is track his weight for next 7 weeks since it seems appetite drops off about week 6 and he loses what he has gained the previous weeks.

Weighed him last night and he is at 124.6 so up almost 3 pounds in a week.

GI is thinking to see when appetite/weight start to drop and adjust timing of infusion to see if it makes a difference but he wants data to bring to the insurance for approval.

Thoughts from the committee?
 
Tracking his weight to see any timing connection makes alot of sense - would certainly be helpful to you and GI to determine if schedule needs tweaking.

As far as weight gain... I can only speak from my experience but, when S went from EEN to supplemental, he was worried that he'd get 'fat' because he was going to take in 1500 cal/night, 5 nights/wk on top of a regular diet. S thought it would be too many calories and how could he not gain unwanted weight by adding all these calories. In the end, S did not gain unwanted weight at all - even though he ate a normal amount of calories each day AND had the extra 1500 cal. While he'd skip breakfast (was full from overnight feed), he would have a normal lunch (sandwich, apple, pizza, etc.), a full dinner and then a large late snack (whole pizza, grilled steak, etc. right before feed! :eek:) (I think the late snack sort of replaced breakfast as the 'third' meal??). Throw in snacks and junk food (McDonalds, wings, pizza after hockey, poutine at school, etc.) and he certainly had more than sufficient calories during the day.

I can't explain why he didn't gain unwanted weight?? While he was active with lots of hockey, etc., he was just as active before dx/een/supplemental, wasn't unusually skinny yet wasn't taking in those extra 1500 calories.

Would S have had trouble maintaining his weight if he wasn't on supplemental EN??? It would seem logical to assume yes??

IDK... maybe these kids just need some extra calories?? Maybe absorption remains hampered until remission is solid and stable for a long period??
 
Do you think scar tissue would hamper absorption? Just thinking I don't know if it's there but guessing since he had such prolonged simmering inflammation in the small intestine that maybe scar tissue formed.

I'm working on trying to get him to agree to supplemental EN again but I need to work it so he thinks it's his idea. You know the whole compliance thing and teenage boys. I was thinking maybe a food diary so he can see how many calories he is consuming in the beginning when he is gaining weight as opposed to how many he is not consuming when he starts to lose. That way it will be his idea to add more calories. kwim?
 
As far as I know (and I could be wrong??), scar tissue does affect absorption. But, I tend to think it has more to do with the combination of crohns and this stage in their life (developmental aspect). Because, if it's a matter of scar tissue, which perhaps S had/has as well, then why is it that now, when S has reduced his supplemental calories (1-2 Boost shakes,250-500 cal and likely forgets some days entirely), he has NOW gained some unwanted weight? Absolutely, some of it is from him eating more fast food, etc. but, he is decently conscientious (for a 20-something boy :lol:) about trying to eat healthy.

If it was simply scar tissue, then he should have lost some weight when he cut out the overnight feeds. (Altho, one glitch is that he did have ongoing inflammation earlier, and now remicade has taken care of that).

I think there are lots of demands on your body when growing/developing and then there's crohns on top; possibly even when in remission, having crohns puts additional strain and their bodies just need a bit more nutrition. At S's age now, his body is no longer trying to support the 'development', so the demands are a bit less. I seriously have no idea if there's any validity to what I'm saying :rof: this is just the logic that makes sense to me. :)

And, I totally agree with trying to make it his idea. It was easier for me/S because the EEN and then supplemental WAS his treatment so we didn't really think we had any options (and GI didn't really give S any other option). Don't forget the body-building angle ;)... it was something that helped S stay in line. :)
 
A calorie is not a calorie
Some take more energy for the body to exert to use
Elemental takes the least amount and food the most amount.
Ds is upping humira for the same reason
Symptoms and weight loss after 7 days so he loses what he gained during three days.

Awaiting insurance approval now

Pushing for en would be good
Weight liters and pro athletes use protein shakes for a reason
( highlight this to him)
Use growth curves to highlight your point
Where he should be vs where he is heading
Average for kids his age etc....
Ds saw a crohns kiddo who wouldnt drink shakes is slightly older but 6-8 inches shorter and 30 lbs lighter
He no longer complains about shakes even though he is mostly een at this point (80/20 on a good day )
 
A calorie is not a calorie
Some take more energy for the body to exert to use
Elemental takes the least amount and food the most amount.
Click to expand...

That seems to support what I was saying? The fact that S was taking in 1500 cal of enteral nutrition means he was absorbing more, and added to his food calories, he should've gained 'extra' weight. The fact that he didn't gain alot of 'extra' weight, seems to imply his body needed more than typical. Not saying he didn't gain weight, he went from 140ish (pre-dx) to 170ish in 2-3 years but his friends had similar gain/development yet they weren't taking in an extra 1500 cal/night.
 
I do think scar tissue affects absorption but since your son is in a cycle, I don't think that would be the likely cause.

If Remi levels were fine at infusion it doesn't seem to make sense that the weight drop at the earlier week mark would necessarily have to do with Remicade stopping to work but what about Crohn's does make sense?

Perhaps he just needs a higher level of Remicade for his body? Maybe an o.k. level is just not o.k. for him. So upping dose or shortening interval might fix it.

The good news is the insurance companies consider the levels test "experimental" so maybe they will look harder at a weight log.

A food diary is never a bad thing. Sometimes you feel like you are non stop eating but when you actually count up those calories, you see you are way off. Vice Versa also.

Good Luck
 
crohnsinct said:
Perhaps he just needs a higher level of Remicade for his body? Maybe an o.k. level is just not o.k. for him. So upping dose or shortening interval might fix it.
Click to expand...

This is what the GI and I are leaning towards, since we had a similar experience with Imuran and the GI kind of laughed and said of course with Jack we can never trust a blood test to tell us the true story.

He's already at 10ml/kg so he didn't think the insurance would likely approve an increase in dosage but would a shortened interval with data to back it up. The question is to move to 7 weeks or 6 weeks.

Okay now that I'm writing and thinking about this when he was on the 10ml/kg at every 6 weeks I don't think we had any weight issues it was just when we moved out to every 8 weeks that we started having weight problems. Going to have to go back and check data from when we made the switch and see if it correlates. He started losing weight last February, I'm fairly certain and I think we made the switch to every 8 weeks the August before that.

HMMMM, off to do some research
 
Our doc usually goes for the shortened interval first. I have also read that many docs do the same. So you are good there. That said, O was at 12mg/kg fro a bit so they just might approve it.

Ooooh! More research!
 
Alright still researching but here's what I have so far, thoughts?
9/3/14 110 lbs 32% (start of 8 week cycle) 5'4"
10/29/14 116 38% 5'5"
12/23/14 118 32% 5'6"
2/17/15 128 51% 5'6.5"
4/14/15 124 35% 5'7"
6/9/15 123 23% 5'8"
8/4/15 122 16% 5'8.5"
9/29/15 122 12% 5'9.5"
So date of infusion weight, % for BMI and height. So while weight hasn't been dramatic decreases when coupled with growth he's dropping down into that low level of weight again for what it's worth he was at 11% when we started remicade.
 
Yeah, definitely share that % data with your doctor--that really shows the weight changes better than total weight, since Jack's grown so much over the past year. And your idea to track weight through the Remicade cycle is a good one. It's great that he doesn't have any antibodies!
 
Ummm yeah. Our GI considers growth with no corresponding gain, technically a loss. So that kind of growth along with a decrease in weight would definitely perk ears...but you already have him on board so that's good.
 
If he has a smart phone or an ipad or ipod, there are many apps that he could use to track his calories (myfitnesspal is one). They're a bit tedious but in M's case, she only had to do it for 3 days before she realized how little she was eating and she needed to do something (in her case, the NJ tube). In this case, maybe it'll convince him to drink protein shakes or supplemental EN or something or the other!

M was on high dose remicade for a while -- went all the way up to 20mg/kg every four weeks. It's used to experimentally for severe JIA or uveitis. It didn't take too long to get it approved but we did start it when M was inpatient.

We haven't met many kids on high dose remicade, but have met many on 10mg/kg every four or five weeks.

Glad he doesn't have antibodies!
 
Last edited:
How are they weighing him? In a gown? With shoes on?
I have been surprised to see how some doctor's office weigh people-- with pants, winterclothes and shoes sometimes vs shorts and bare feet. It can make a difference.

Do you trust the 128lb reading? I think 124-122 could be seen as a stable weight depending on how accurately the weight is done -- but yes the BMI% is going down from 35% to 10% by my calculations over the past year.

By the way, that's an awesome growth spurt -5.5 " in a year! Wow!
 
No gown, shoes off pockets empty. He pretty much always wears a similar outfit so yes clothes would add weight but it's probably close to the same amount each time. Yes xmdmom I would probably consider weight stable if height stayed the same.
He just looks so much thinner, and clothes are almost impossible to find his waist is so small
 
I do the same with C. He wears basketball shorts and a tshirt each visit. Shoes off and pockets empty. When it starts to get cold he just puts sweats or on over basketball shorts and strips off at weigh in.
 
We do the same - if M is wearing a coat or a sweater they make her take them off before weighing her. They also try to use the same scale (though they claim all the scales in the hospital are calibrated to be the same!).

We have M weigh herself at home every two weeks or so, so we know what she weighs on our scale at home too. That's also an easy way to see how weight is trending.
 
I think I'd be leaning toward increasing the Remi frequency. When DS was on the eight week schedule, he was doing the same thing of losing 3-5 pound around week six. Just wasn't hungry. Since we upped his dose and frequency in June, he has been staying consistent through the entire six week cycle.

With school starting, is J eating less due to the new schedule? No time to eat kind of thing?
 
I think he actually does better during school as he is more on a schedule so he eats breakfast, lunch, dinner, a snack at break and usually a snack after school. Where in the summer he sleeps late so will skip/sleep through breakfast. He has a big problem with not feeling hungry so will "forget" to eat if he is involved in other things.
 
Maybe try an appetite stimulant like Periactin/cyproheptadine before changing the Remi dose? He may eat more during school, but is he also more active with PE/sports etc?
 
Nope, no PE and no sports this fall. We've done periactin in the past but that is a good idea to bring up with his GI, thank Jenn
 
Honestly given lack or growth or weight is a good indicator of something not right with him
Add in you see an increase of appetite with remicade
Artificially increasing his appetite won't necessarily fix the real problem
Hopefully the Gi feels an increase is the way to go .
 
We've done weekly weights since his last infusion and he gained about a pound a week, hitting 129.6 last Sunday and yesterday 125.4. His next infusion is scheduled for the 23rd. Unfortunately, his GI is going to be out of the office so I don't think there will be a big discussion about it although I am curious to see if it happens again for another cycle so I don't really have a problem waiting another 8 weeks to see if we have the same thing happen and then decide what if anything we do about it. He feels great and is otherwise doing fantastic.
 
No, I've been trying to get him to but it's hard when he feels he doesn't need to. We've borrowed a juicer from a nurse friend for a couple of months and I'm going to see if I can't make something up with it that he will drink although if I could get him to supplement again maybe the additional weight he gained in the beginning would equal to an overall weight gain the whole cycle instead of no weight gain or a loss especially when you add in the extra height and yes I'm pretty sure he's grown at least another 1/2" or more the last 8 weeks.
 
big juicing fan here. They are great for getting some additional nutrients in but they are very low in calories so not really sure it would help him gain much.

Height is a very good sign. O has bounced around a lot since reaching her all time high. Sometimes I think with these kids every little change in their diet and activity can really make a difference. But if you see a definite cycle of gaining right after infusion and then a loss right before it may be time to investigate shortening schedule.

I can't remember. Did you pull a levels test recently?
 
Yes we did and all good according to their ranges but then we know how Jack likes to skew those since at times of massive inflammation and talking surgery he was still within normal ranges on labs so something the GI is keeping in the back of his mind which is why he is wanting me to track weight so if necessary he has data to go to the insurance company why we need to shorten schedule.

I'm really enjoying the juicing as is hubby and even his brother has really liked them, Jack not so much. So maybe we'll keep doing it for the health benefits and who knows maybe I might actually lose weight.
 
yay you for juicing! We really rely on it as my family doesn't reLly love the veggies but mixed with some pineapple or Apple juice they suck it right down!

The levels test is usually pretty accurate as it is just testing to see how much remi is still in the blood stream but if GI can get approval for the increase I would go for it and see if it fixes it before thinking loss of response. Any other symptoms?

Man weight really screws with us doesn't it? Just a few weeks back o was losing a pound a day. Then suddenly stopped and reversed. No change in treatment. What's up with thAt? I know she is very sensitive to any change in diet so one light meal and she loses.
 
crohnsinct said:
Man weight really screws with us doesn't it? Just a few weeks back o was losing a pound a day. Then suddenly stopped and reversed. No change in treatment. What's up with thAt? I know she is very sensitive to any change in diet so one light meal and she loses.
Click to expand...

That's what I'm hoping for because otherwise he's fantastic. I think the GI is concerned since he's such an asymptomatic kid and that was something we could count on to monitor disease activity in the past. I guess we're just adjusting to what is "normal" for him now.

Probably since our kids are so skinny that when you are talking a pound or two it's big when you're talking 5 pounds it's huge! In the meantime, a belt is his best friend. We recently went out of town for the weekend and he was wearing sweats when we left and, of course, he forgot a belt, I had to run out and buy a belt so he could leave the house without his pants falling around his ankles.

Good thing Jack loves his veggies, his younger brother it's always a struggle, but I made a pineapple, pomegranate with kale yesterday and he sucked it down said it was delicious.
 
When Jaedyn starts tolerating more foods, I'm gonna need some of everyone's favorite veggie juice recipes!
 

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