Crohn's Disease Forum » Treatment » Remicade/Infliximab » Anyone experienced weight loss on remicade


01-04-2018, 11:59 PM   #1
Osmama
 
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Anyone experienced weight loss on remicade

My son has been on remicade and is in "remission". However he has continously been losing weight. Iam frustrated with the GI dr. The Dr did blood work and CT scan due to his concern with the weight loss. The tests came back fine. My frustration is the Dr basically says the weight loss is not from the crohns because he is in remission. I do not agree since my son has never had the weight loss issue before crohns. I am thinking that it must be caused from the remicade at this point. Has anyone else experienced weight loss from remicade?

Last edited by Osmama; 01-05-2018 at 12:00 AM. Reason: Misspelled word
01-05-2018, 12:24 AM   #2
Maya142
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Hmmm...have you tracked his calories? How much is he eating? Has he seen a dietician/nutritionist to figure out if he is getting enough to maintain his weight? How old is he?

My daughter became very underweight due to Crohn's and Gastroparesis. When she was trying to regain the weight, we figured out that she needed more calories than a typical teenager to gain weight.

She was 5'2 and 80 lbs at her lowest weight. Her nutritionist expected her to gain weight on 1800-2000 calories (she was 18 at the time, so done growing), but it really took 2400 calories before she gained weight.

She also had to get the majority of her calories from formula - elemental formula, which is broken down into amino acids and is easily absorbed.

Does your son have any scar tissue that may be prevent absorption of calories? Even if he is in remission, if he has scar tissue, that could mean that he's not absorbing what he's eating. And if he's not eating enough AND he's not absorbing it, then that would explain the weight loss.

Would he be willing to either drink formula like Peptamen Jr/Neocate (semi-elemental or elemental)? Many kids and teenagers with IBD need formula to help with weight gain and growth because of absorption issues.

My daughter continued to lose weight on Remicade but in her case it was due to Gastroparesis, which had not been diagnosed at the time. Her Crohn's went into remission but she was still losing weight. But in her case it was clear she was just unable to eat enough because of the Gastroparesis (delayed gastric emptying). Food would just sit in her stomach and she would get full very quickly and nauseous, so she just could not eat much.

Once we got her on a motility medication and she was put on formula through a feeding tube, she gained weight quickly.

I'm going to tag some more parents who may have more weight gain ideas:
my little penguin
crohnsinct
Jmrogers4
pdx
Tesscorm
Clash
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-05-2018, 10:54 AM   #3
crohnsinct
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The weight loss most probably is not caused by Remicade as the drug itself doesn't cause weight loss. However, I would have the same concern about remission. Has he also had colonoscopy/endoscopy to get a good look to determine remission? How about fecal calprotectin test? Blood markers are not always as reliable as fecal markers.

Assuming he is in remission, I would start with tracking calories to see how much his intake is. Before diagnosis many Crohn's sufferers start eliminating food because food causes problems for them. For kids especially, avoiding food becomes a learned behavior and they have to relearn to trust their body again. So I would definitely start with watching how much and what he is eating.

Once in remission my daughter surprisingly needed 3000 calories to gain after she was in remission but she was also an athlete.

A consult with a dietician familiar with Crohn's disease is a good idea.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-05-2018, 12:24 PM   #4
my little penguin
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Same here
Ds was dx woth gastroparesis well after his Crohns dx
We were constantly chasing Crohns
And he was having trouble eating
Belly pain etc...

He started meds for his gastroparesis and went on elemental formula as part of his diet. Plus solid food
No issues since
Definitely check Crohns out first
Woth a scope etc...

And track calories
We used my fitness pal app
Works well
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DS - -Crohn's -Stelara -mtx
01-09-2018, 03:13 PM   #5
Jmrogers4
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I would 2nd further investigation to make sure it is or not Crohn's related but I would not think it the Remicade itself although everyone reacts differently my son is ravenous after an infusion. He still has trouble gaining weight but I think it's partly genetic. We're okay as long as he isn't loosing.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-10-2018, 05:40 PM   #6
Osmama
 
Join Date: Apr 2017
Location: California

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Hmmm...have you tracked his calories? How much is he eating? Has he seen a dietician/nutritionist to figure out if he is getting enough to maintain his weight? How old is he?

My daughter became very underweight due to Crohn's and Gastroparesis. When she was trying to regain the weight, we figured out that she needed more calories than a typical teenager to gain weight.

She was 5'2 and 80 lbs at her lowest weight. Her nutritionist expected her to gain weight on 1800-2000 calories (she was 18 at the time, so done growing), but it really took 2400 calories before she gained weight.

She also had to get the majority of her calories from formula - elemental formula, which is broken down into amino acids and is easily absorbed.

Does your son have any scar tissue that may be prevent absorption of calories? Even if he is in remission, if he has scar tissue, that could mean that he's not absorbing what he's eating. And if he's not eating enough AND he's not absorbing it, then that would explain the weight loss.

Would he be willing to either drink formula like Peptamen Jr/Neocate (semi-elemental or elemental)? Many kids and teenagers with IBD need formula to help with weight gain and growth because of absorption issues.

My daughter continued to lose weight on Remicade but in her case it was due to Gastroparesis, which had not been diagnosed at the time. Her Crohn's went into remission but she was still losing weight. But in her case it was clear she was just unable to eat enough because of the Gastroparesis (delayed gastric emptying). Food would just sit in her stomach and she would get full very quickly and nauseous, so she just could not eat much.

Once we got her on a motility medication and she was put on formula through a feeding tube, she gained weight quickly.

I'm going to tag some more parents who may have more weight gain ideas:
my little penguin
crohnsinct
Jmrogers4
pdx
Tesscorm
Clash


I appreciate your reply. My son was a senior in high school when he was diagnosed 2yrs ago this month. He had not been feeling well for a few months and then it came on, full flare up. We had no idea what was happening as he had no issues prior to this. Our experience with crohns has been that first flare up followed by colonoscopy and then remicade. It still feels like it was just last week that he was diagnosed. The adjustment has been difficult for him.

We have not tracked his calorie intake and have not seen a nutritionist as of yet. We just asked his Dr for a referral to a nutritionist last week. He is very fatigued from the weight loss and recently started drinking the Ensure weight gainer. He is trying to make himself eat but struggles with not having an appetite. We are hoping things will change for the better soon.

Thank you again this has been a struggle......
01-10-2018, 05:45 PM   #7
Osmama
 
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The weight loss most probably is not caused by Remicade as the drug itself doesn't cause weight loss. However, I would have the same concern about remission. Has he also had colonoscopy/endoscopy to get a good look to determine remission? How about fecal calprotectin test? Blood markers are not always as reliable as fecal markers.

Assuming he is in remission, I would start with tracking calories to see how much his intake is. Before diagnosis many Crohn's sufferers start eliminating food because food causes problems for them. For kids especially, avoiding food becomes a learned behavior and they have to relearn to trust their body again. So I would definitely start with watching how much and what he is eating.

Once in remission my daughter surprisingly needed 3000 calories to gain after she was in remission but she was also an athlete.

A consult with a dietician familiar with Crohn's disease is a good idea.

Hi, Yes he has had a second colonoscopy/endoscopy to confirm that he is in remission. We have not yet seen a nutritionist but hope to soon. He has almost no appetite and has recently started drinking the Ensure weight gainer shakes.

Thank you for your reply
01-10-2018, 05:55 PM   #8
Osmama
 
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I would 2nd further investigation to make sure it is or not Crohn's related but I would not think it the Remicade itself although everyone reacts differently my son is ravenous after an infusion. He still has trouble gaining weight but I think it's partly genetic. We're okay as long as he isn't loosing.


I appreciate the input. The Remicade definitely makes me nervous. Especially when you read all of the possible side effects. He has other side effects with skin issue and lower back pain.

How long has your son been on remicade and how old is he? Has he had any side effects?

My son has really struggled with being diagnosed with crohns.

Thank you
01-10-2018, 07:20 PM   #9
Jmrogers4
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He is 18 now and 10 at diagnosis and has been on remicade for exactly 4 years (first dose January 9, 2014). Is he still having skin issues and joint pain? Have they checked remi levels? Maybe it's just not quite there yet. We messed around with timing/dosage the whole first year and he would gain weight right after infusion and then 2 weeks before next infusion he would lose all he had gained.
For what it's worth my son would get eczema as a symptom, it was one of our clues things weren't under control since labs were always normal. He had joint pain in wrists and ankles also. Has not had any issues once we got to a dosage/timing that kept him in remission between infusions so 3 years.
No side effects for him so far.
01-10-2018, 09:14 PM   #10
Osmama
 
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He is 18 now and 10 at diagnosis and has been on remicade for exactly 4 years (first dose January 9, 2014). Is he still having skin issues and joint pain? Have they checked remi levels? Maybe it's just not quite there yet. We messed around with timing/dosage the whole first year and he would gain weight right after infusion and then 2 weeks before next infusion he would lose all he had gained.
For what it's worth my son would get eczema as a symptom, it was one of our clues things weren't under control since labs were always normal. He had joint pain in wrists and ankles also. Has not had any issues once we got to a dosage/timing that kept him in remission between infusions so 3 years.
No side effects for him so far.

They are presently giving the infusions every 8 weeks. I know they have tried giving him longer infusion times to try and see if the lower back pain (which occured evening of treatment) would ease. Other than adjusting the length of time given I dont believe doses have been changed. The skin issues he has been dealing with is cystic acne (which has never been an issue before remicade) and really dry,flaky skin.

Im happy your son is responding to the remicade and thank you again for answering my post.
01-14-2018, 08:42 AM   #11
my little penguin
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Definitely ask the GI about a gastric emptying test
To determine if gastroparesis is happening
Ds had no appetite and was having a hard time eating even a small amount of food
He now takes meds to help woth emptying and elemental formula (neocate jr)

Good luck
01-17-2018, 02:53 PM   #12
Tesscorm
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My son has been on remicade for approx. 5 years now. He did not lose weight after starting remicade. However, his treatment prior to remicade had been enteral nutrition (nutrition formula). To induce remission he was taking in 3000 cal/day thru the nutrition formula and no other food. Then, to try to maintain remission using the formula as the treatment, he was eating a regular diet PLUS taking in 1500 cal/day from the formula. This process, over a couple of years, helped him gain 40+ pounds to get to a healthy, strong weight/build (he'd lost quite a bit prior to diagnosis).

Once he started remicade, he stopped taking in so much of the nutrition formulas but moved to drinking 1-2 Boost shakes per day. He still continues to do this. I'm sure the extra calories from the shakes helps maintain his weight (and nutritional intake).

Did any scar tissue show on the scopes? I'm asking because he could be in remission but have old scar tissue and, IF I'm correct??, nutrients cannot be absorbed through scar tissue. Perhaps this could be a factor?

But, the lack of appetite is a different issue. That should also be investigated. Something is causing his lack of appetite... be it crohns or gastroparesis or something else.

If he can tolerate the Ensure shakes, I would continue with those as much as possible. But, be sure they are not 'replacing' a meal as you'd be no further ahead in this case.

__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
01-18-2018, 08:32 PM   #13
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Location: California
Hi Osmama, I'm sorry to hear about your son's experience. I am no longer on Remicade, but when I was on this medication I had a similar experience. It very challenging when you first start the medication. It is very frustrating getting information from physician's. I used to call the manufacturer, and they were somewhat understanding, and helpful. Especially, a nurse named Drew, he was very knowledgeable. When I had the similar experience, he did go over the clinical trial data with me helped me understand things. You should try the manufacturer, maybe they can provide some insight.
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