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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade and weight gain?


 
04-15-2014, 06:42 AM   #1
Lottie93
 
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Remicade and weight gain?

Hello,
So on Thursday I have my first remicade infusion.
Looking online I've read horror stories of people gaining like 20/40lb while on the infusions and It got me worried about the effects or remicade.
I'm really happy with my weight atm, I'm not underweight and do not need to gain any weight.

Can anyone advise if this is just a few people? Or just those who for example have been underweight and their bowel is healthier so they naturally absorb more this gain weight?

Doctors say there is no real link between the weight gain but all these stories have made me really anxious as I really don't have much of an idea of what to expect.

Thank you

Last edited by Lottie93; 04-15-2014 at 07:56 PM.
04-15-2014, 07:55 PM   #2
Lottie93
 
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Any advice would be really helpful. Even if it's just you had no massive side effects to report. Would just be nice to know what to expect!
Xx
04-16-2014, 12:20 AM   #3
Zeppy321
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I was on Recmiade for about a year when I was first diagnosed with Crohn's. I felt like I had the flu everyday for that year . I told my doctor I was not going to take it anymore but I know it has been wonderful for others. Everyone is just so different.I didn't gain any weight while I was on it though. I'm sorry I don't have anymore info . I'm sure someone who does will come along soon. Take care.
04-16-2014, 06:19 PM   #4
carrollco
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I am coming up on my 4th infusion and while I have gained a few pounds, I haven't reacted like I did when on Humira. I gained 50 pounds on that stuff. Truth to tell though I was on a low residue diet which is mostly carbs. Now I am SCD legal and I am holding my own.

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Louann
First diagnosed 12/4/10
Humira 4/7/11 and lovin' it


Previous Meds:

Methotrexate--had kidney/liver damage
Lialda--allergic to aspirin--but didn't know until my Crohn's got much worse.
Prednisone--only when I have to!
04-22-2014, 06:38 AM   #5
Fosterfamily2303
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I have had 5 infusions amd have not gained...i actually lost weigjt. I think people gain because they were Npt eating enough or not obsorbing food prior...from not feelimg ggod and the disease and start to feel better and eat better.

Good luck
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Meds: Pentasa, Imuran, Remicade and Tramadol
04-22-2014, 08:32 AM   #6
Lisa
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I think a big reason for weight gain is that as your body heals, it is able to absorb more nutrients - for me it is a matter of not taking in as many calories as I used to - not an easy thing to accomplish after decades of always trying to put weight ON vs maintaining or losing.
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
04-22-2014, 11:32 AM   #7
maggiesfour
 
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Hi Lottie93,

I agree with pasobuff. I am on Remicade for almost a year, and finally, between my last two infusions, I gained 15 pounds. I had worked so so hard to keep an extra ten on, and then, bam!! No I gain weight, just like normal people. LOL and now, I have to figure out how to loose it like normal people! lol that will be a joy. Once I can start moving about freely, like normal people, I will loose it. Just such a comfort to know I can gain!

The good news Lottie93, is that the Remicade works differently for everyone.
04-22-2014, 01:57 PM   #8
theOcean
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I was on Remicade for awhile and it never caused me to gain any weight.
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-22-2014, 03:50 PM   #9
Maya142
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Both my daughters have been on Remicade and neither gained any weight. My younger daughter has IBD and arthritis and is underweight so we would have been quite pleased if she had gained but she stayed the same weight (didn't lose any more though which is good!).
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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
08-20-2014, 11:18 AM   #10
Saucy
 
Join Date: Aug 2014
I've had Crohn's for over 25 years. In 2012, the disease caused my joints to become greatly inflamed and painful. The Doctor put me on Humira injections. The injections not only didn't help, but quickly put on 15 pounds. I've now been receiving Remicade infusions for a while. The Remicade is helping. Unfortunately, another 10 pounds were added soon after I began the infusions.

As I am accustomed to being thin, not skinny, the extra weight makes me uncomfortable. Though I am thrilled to be able to move my wrists and elbows without pain, etc.

Crohn's is such an odd illness. It causes each of us different symptoms, and we react in different ways to medications.

I wish everyone well!!!
08-23-2014, 07:39 PM   #11
Lottie93
 
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Hello everyone,
Thanks again for all the responses.
Been on remicade for a bit now and have so far managed to maintain my weight, gained a few pounds but nothing significant !! Guess like you guys said it completely depends on the individual

Remicade has worked wonders for me, im actually absorbing vitamins now which is great and really helping the energy levels, closet ive felt to normal since I got ill!!

Hope you are all well Xx
08-29-2014, 01:17 AM   #12
Snitzer1
 
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I've had two Remicade infusions in the last month-My loading phase.

In that time I've gained about 15 Lbs with a lot around my waist and what seems to be a "coat of fat" around my body.

Before the Remicade I lost a lot of weight, not much of an appetite and what I did eat wasn't digested properly so its very likely that some of the gain was a "rebound" effect;My body absorbing nutrients better.

But from what I've read so far Remicade itself causes weight gain in a lot of Crohn's users.

I ballooned up to 415 Lbs on Prednisone years ago and now weigh 222.

QUESTION: How hard is it to lose the weight gained from the Remicade?
08-30-2014, 07:03 PM   #13
IofNewt
 
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I've had 2 infusions now and I have gained over 10 lbs. I am not eating more either. In fact, I am still feeling like crap and have no appetite. I am exhausted and running to the bathroom a lot.
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Diagnosed with Crohn's in the 1990's
Treated with Flagyl in the past, but now taking Purenitol.
Started with Remicade Aug 6, 2014. Also using Imodium
Had resection in June 2013, but have a recurrence
already.
08-30-2014, 07:27 PM   #14
Snitzer1
 
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Thanks for your input.

I read somewhere that people with Crohn's who get Remicade gain more weight than those getting it for Arthritis and other autoimmune disorders.
09-02-2014, 01:28 PM   #15
RemicadeCausesGain
 
Join Date: Sep 2014
I was diagnosed with severe Crohns - Ulcerative colitis in 2007. I immediately started on Remicade infusions and continue to get them. Before I was diagnosed with this disease, I weighed maybe 118 at 5'2" and was an active fitness competitor. A sudden onset of Crohns had me down to 104 lbs within a 3-week period. Once I started Remicade, I shot up to 120 and remained there for the first five years. I was still going to the gym 5 days per week, eating super clean as always and had no flares. In the past two years, not only has my weight increased to 142 (heaviest I have ever been), I have also had to be placed on blood pressure medication for hypertension (I am in my mid-40s and never had this/not hereditary). I have been battling trying to lose the weight and cannot get the scale to budge. I've even gone on a 1200 calories per day diet for the past 8 weeks to prove a point to my gastro who refuses to acknowledge that the cause is Remicade. I've had every blood test in the world. He insists that because it is not in the "side effect" listings on the drug, that it cannot be true. Meanwhile, my friend has been on Remicade for 16 years, has gained over 80 lbs, still works out and eats healthy. She is battling with her gastro to get her off this drug. I've found studies regarding Remicade and weight gain and I am convinced there is a major link. I am scheduled for my second colonoscopy in October, if my colon looks significantly better, I will be demanding to try an oral medication. I find it very interesting that whenever my insurance switches and Remicade is not covered, the doctor's office quickly finds a way to keep me on it (the Remistart program) which makes me ponder what benefit the physician is getting. My girlfriends is going through the exact same thing. It is odd. The initial thing I was told was that I would only be on this drug to get my Crohns under control. Now they wont take me off it. Insurance only covers colonscopys every seven years so I find it ironic that I was told this.
09-02-2014, 01:32 PM   #16
RemicadeCausesGain
 
Join Date: Sep 2014
Thanks for your input.

I read somewhere that people with Crohn's who get Remicade gain more weight than those getting it for Arthritis and other autoimmune disorders.
Yes, this is true!
09-02-2014, 01:36 PM   #17
RemicadeCausesGain
 
Join Date: Sep 2014
I've had two Remicade infusions in the last month-My loading phase.

In that time I've gained about 15 Lbs with a lot around my waist and what seems to be a "coat of fat" around my body.

Before the Remicade I lost a lot of weight, not much of an appetite and what I did eat wasn't digested properly so its very likely that some of the gain was a "rebound" effect;My body absorbing nutrients better.

But from what I've read so far Remicade itself causes weight gain in a lot of Crohn's users.

I ballooned up to 415 Lbs on Prednisone years ago and now weigh 222.

QUESTION: How hard is it to lose the weight gained from the Remicade?
Read my post about my experience. It seems those who have been on it for a substantial amount of time experience this weight gain issue. I've tried EVERYTHING to get the weight off. I have always been a gym rat and also very knowledgeable about nutrition so this has been extremely frustrating to me. It is making me very angry that my concerns are not being taken seriously and I've had to go on blood pressure pills (probably as a result of the weight gain) but I have read that there is a small percentage of those on Remicade who have high blood pressure as a result of long term use. So what do you do? Potential heart disease or potential flares?
09-02-2014, 02:42 PM   #18
Snitzer1
 
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When I saw my GI after my first two Remicade infusions I brought a list of side effects and he dismissed all of them (of course!) except for the weight gain which he said, "I can't help you with that" but stressed the benefits I gained from the Remicade.

My Hemoglobin was off the charts low, I had severe Edema, Erthema Nodusom on my calves and the outside of my knees, painful joints, severe loss of strength;A systemic attack from my Crohn's which is centered in my large intestine.

So I'm grateful to be making progress from the Remicade so far but since I work out, drink over a gallon of water a day and am pretty strict with what I eat there's no way that I'm going to allow the weight gain to continue as you all know that obesity carries its own severe health risks as someone here wrote that they have to take anti hypertenstives due to their weight gain.

Having weighted 415 from Prednisone and getting down to 207 is a big reminder how much I do NOT want to "balloon up" again.

I'm now 226 and I'll see what more dietary restrictions can do.
There is no way I will starve myself-


If I gain TOO much from the Remicade I'll take myself off of it and face the risks-Hopefully my GI would be amenable to putting me on Humira.

Its hard to find a doctor to prescribe Low Dose Naltrexone (SP) which is supposed to help nearly all inflammatory disorders (its FDA approved).
09-02-2014, 04:01 PM   #19
RemicadeCausesGain
 
Join Date: Sep 2014
Today I called the Remicade support line/customer care. They refuse to acknowledge any reports of weight gain by doctors or patients. Gosh, this is certainly odd since I know of two people who have made complaints.

I also asked them what studies they have done since this drug was approved by the FDA. Guess what? NONE. In other words, the drug was approved even though the studies were not long-term. They have no current studies about anything...those who have been on it long-term. I sure find that amusing!

My friend today won her "battle" to be taken off the drug. She is being put on Vedolizumab (Entyvio). I am going to do some research to see if this is a viable option for me as well.

Those of you who have ANY side effects (high blood pressure, rapid heart rate, unusual weight issues), I encourage you to not only voice your concerns to Remicade directly but to also implore your gastro to do same. They need to conduct a study on this. Also contact the FDA.
09-02-2014, 09:59 PM   #20
Snitzer1
 
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I was offered Remicade when I was first diagnosed in 1996 but declined since the side effects scared the hell out of me.

I'm into the health stuff but my flareup was so bad that if I did not try something quick I would have gotten much, much sicker-Guaranteed as one of my brothers consulted three GI doctors he trusted with my Colonoscopy scans and the doctor's description from the procedure and they all stated how serious it was.

I do not trust the FDA, the USDA or any other dept.
The FDA has and continues to approve of medications which even when properly prescribed kill over 100,000 people a year in the U.S. alone.

There's at least two non-FDA approved clinical studies that show the Remicade causes weight gain and thousands of online forum comments across the web.

Even though I trust my GI a lot (for a doctor) I expected him to minimize the side-effects of it and other drugs although he's been decent enough to admit that Prednisone, 6-MP and Asacol did not help me.
09-02-2014, 11:17 PM   #21
Snitzer1
 
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Today I called the Remicade support line/customer care. They refuse to acknowledge any reports of weight gain by doctors or patients. Gosh, this is certainly odd since I know of two people who have made complaints.

I also asked them what studies they have done since this drug was approved by the FDA. Guess what? NONE. In other words, the drug was approved even though the studies were not long-term. They have no current studies about anything...those who have been on it long-term. I sure find that amusing!

My friend today won her "battle" to be taken off the drug. She is being put on Vedolizumab (Entyvio). I am going to do some research to see if this is a viable option for me as well.

Those of you who have ANY side effects (high blood pressure, rapid heart rate, unusual weight issues), I encourage you to not only voice your concerns to Remicade directly but to also implore your gastro to do same. They need to conduct a study on this. Also contact the FDA.

Do you have any links to the studies done to prove Remicade causes weight gain?

I might have missed them.

As thankful as I am for Remicade helping me for now-This stuff DOES have a FDA Black box warning.
09-03-2014, 09:11 AM   #22
RemicadeCausesGain
 
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I do, but until I have enough posts on here, the forum will not allow me to post links.
09-03-2014, 12:55 PM   #23
RemicadeCausesGain
 
Join Date: Sep 2014
Update...

I called the FDA complaint line today and received a wealth of information. I had never researched or dealt with any FDA stuff prior so if you are familiar with the process, I am sorry to bore you.

The gal on the phone told me that these "post marketing studies" are compiled from doctors reports and that they are VOLUNTARY. Are you kidding me? VOLUNTARY. Therefore, your busy doctor probably wont take the time to report any complaints or adverse issues reported to them by patients. After all, we live in a society where status quo is just fine. I asked her "what about the complaints that patients make directly to the drug manufacturer?" She stated "it is the drug manufacturers responsibility to report those complaints." In other words, a drug manufacturer could simply disregard the complaints and not report them and the FDA would have no clue what patients are experiencing unless enough people banned together and started a class action or generated media scrutiny. I suggested that the FDA send out these forms to ALL end users (patients). That there should be a tracking system (Remicade comes with a batch code) so that patients who experience adverse reactions can report them DIRECTLY to the FDA. She had no comment on that idea.

When I told her about how my doctor is insistent I remain on this drug and that he has scrambled to make excuses every time I demand being removed from it, and that I suspect these doctors are receiving "incentives", I was told that the FDA does not get involved in those types of investigations. She told me if I believe there is a bias going on, I need to report it to my State Authority who regulates that.

Outcome: I am being sent an FDA complaint form to outline my experience with Remicade and the weight gain.

I am just shocked that once the FDA approves a drug, they don't require further follow up and leave that in the hands of the manufacturer who are obviously not going to report new side effects and are not required to fund further studies. SERIOUS CONFLICT OF INTEREST.

Our government couldn't care less. Surprise surprise.
09-03-2014, 01:09 PM   #24
RemicadeCausesGain
 
Join Date: Sep 2014
I've had 2 infusions now and I have gained over 10 lbs. I am not eating more either. In fact, I am still feeling like crap and have no appetite. I am exhausted and running to the bathroom a lot.
I am very sorry to hear this. However, it infers to me that if you are still having bad flares, that the drug is the cause of your weight gain and not because it is curing the malnutrition.

I see most of the posts on here that think it is a great drug are from people who have not been on it over five years. I was like that the first five years I was on it, then blammo, weight gain and high blood pressure.

I'm someone who competed in fitness ten years ago at 7% bodyfat, has always been in phenomenal shape, eats super clean, has no thyroid issues and never had any other health problems. The point I am making is that Remicade may be great for awhile to get Crohns under control but long-term it definitely has bad side effects. Unfortunately, there will be no further studies required on side effects unless a large amount of users speak up to the FDA or the drug is brought under scrutiny because x percentage of people die from it.

I sincerely hope your gastro is able to get your crohns under control and wish you the best! I remember my first two months, sitting and waiting for improvement. It took four doses for me to start having less severe "issues". I hope this brings you peace.
09-03-2014, 08:31 PM   #25
Snitzer1
 
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Update...

I called the FDA complaint line today and received a wealth of information. I had never researched or dealt with any FDA stuff prior so if you are familiar with the process, I am sorry to bore you.

The gal on the phone told me that these "post marketing studies" are compiled from doctors reports and that they are VOLUNTARY. Are you kidding me? VOLUNTARY. Therefore, your busy doctor probably wont take the time to report any complaints or adverse issues reported to them by patients. After all, we live in a society where status quo is just fine. I asked her "what about the complaints that patients make directly to the drug manufacturer?" She stated "it is the drug manufacturers responsibility to report those complaints." In other words, a drug manufacturer could simply disregard the complaints and not report them and the FDA would have no clue what patients are experiencing unless enough people banned together and started a class action or generated media scrutiny. I suggested that the FDA send out these forms to ALL end users (patients). That there should be a tracking system (Remicade comes with a batch code) so that patients who experience adverse reactions can report them DIRECTLY to the FDA. She had no comment on that idea.

When I told her about how my doctor is insistent I remain on this drug and that he has scrambled to make excuses every time I demand being removed from it, and that I suspect these doctors are receiving "incentives", I was told that the FDA does not get involved in those types of investigations. She told me if I believe there is a bias going on, I need to report it to my State Authority who regulates that.

Outcome: I am being sent an FDA complaint form to outline my experience with Remicade and the weight gain.

I am just shocked that once the FDA approves a drug, they don't require further follow up and leave that in the hands of the manufacturer who are obviously not going to report new side effects and are not required to fund further studies. SERIOUS CONFLICT OF INTEREST.

Our government couldn't care less. Surprise surprise.

Thanks to the FDA's serious conflicts of interest there are graveyards numbering in the millions of trusting patients (over decades) thanks
to drugs they approved.

Its basically common knowledge that the "double blind" studies are extremely biased just as FDA whistle blowers get fired and punished.

I'm going to have to "play it by ear" as far as the Remicade goes;After two infusions my flareups and inflammatory disorders are under control and gone, respectively.

But if the weight gain gets to a dangerous point and/or I build up antibodies to the Remidcade and have horrible reactions then I'm done with it, regardless of what my GI says.

I've read about people on Remicade whose GIs put them on medications that help them tolerate the Remicade therapy more-That is insane.



Thank you for taking the time out to contact the FDA.
09-10-2014, 11:46 AM   #26
RemicadeCausesGain
 
Join Date: Sep 2014
After being put on minocycline for a month due to unexplained rash shortly (four days) after my previous Remicade infusion and what was labeled "cystic acne", my skin is finally clear. It took a month and I have been off of the minocycline for a month and no further skin issues. Derm states it was a bacterial issue. I believe this is due to Remicade and my body starting to develop reactions to it.

I just had another infusion which I dreaded. Discussions with the nurse and a letter I wrote outlining everything plus the websites about Remicade causing weight gain over time, bad LDL and also spikes in blood pressure, it appears I will be moved off this drug. We discussed the great results of Entyvio which is not a TNF blocker. I have an upcoming colonoscopy so I'm hoping this was my last Remicade infusion for good. Entyvio is also infused but only takes a half hour...not 3 hours. No idea what insurance companies stance is on this drug, I'm hoping the same as Remicade and full coverage. It will save them money because they wont have to pay for the infusion hours/labor.

While Remicade may be great at getting severe issues under control, it certainly does not appear to be a good drug for the long haul. The manufacturer is not doing further studies on it nor do they care about people reporting side effects. I've pretty much had it with them and their lying.

I will know more in October. Waiting for my colonscopy results to come back before deciding what other drug to try. Since nobody has ever tried another drug in the past seven years to treat this, I find it very hard to believe that "if we take you off Remicade, another drug may not work". Yeah, ok, I'll take my chances if it minimizes the side effects. I shouldn't have to pick between Crohns and damage to my heart due to this drug.
09-12-2014, 07:58 PM   #27
David1622
 
Join Date: Sep 2014
Location: Citrus heights, California
I've been on remicade sense the freshman year in highschool and am currently looking for alternatives but I gain 50 pounds when I started and can shake the weight
09-12-2014, 09:24 PM   #28
Snitzer1
 
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Have you tried drinking a lot of water?
Half your weight in ounces a day might help.


Have you tried keeping a food journal in which you first calculate how many calories a day you need to lose weight and write down the date, food eaten, the portion/measured and how many calories in it?

It will help to avoid any white sugar, refined grains (such as white flour), too much sodium and bad fats such as Hydrogenated oils will keep the weight gain on and (and make you sick) and Aspartame or Nutrasweet is a definite neurotoxin.

The MAIN thing I realized about my Remicade weight gain was that it was more of a bloating issue-A really weird distribution of fat especially around the waist but I'm 52 and that could be an age-related thing.

Thankfully, my weight gain stopped as soon as I lost my cravings to stuff my face with sandwiches, chips, rice crackers & cheese dip and avocado dip (weird huh?).
09-12-2014, 11:11 PM   #29
RemicadeCausesGain
 
Join Date: Sep 2014
I probably didn't mention how I eat. I've always eaten very clean, not processed stuff or junk. Sugar is not part of my diet. I was a fitness competitor prior to developing crohns. My body does well with less fats and carbs. Typically I eat all lean protein and dark green veggies, egg whites, a little avocado or nut butter because you need some good fats. My protein consists of lean ground turkey, fish, chicken and sometimes bison or lamb when. Once per week I will have a cheat meal. I occasionally eat steel oats and brown rice. At 1200 cals per day, 5 days at the gym, there is no reason I should be 20lbs heavier than I was prior to crohns onset.

The only time I bloat is if I eat dairy which doesn't agree with me.
I know how to do calculations on RMR, BMI, etc.
I take prenatal vitamins and omega 3s.

It is the remicade. I've tested my diet and nothing works. I definitely know how to shed body fat having been at 7% for shows. Age is not a factor, the drug is. Had every medical test in the book...thyroid, cbc, etc.
09-12-2014, 11:17 PM   #30
RemicadeCausesGain
 
Join Date: Sep 2014
Ps. The infusion I had on Tuesday caused my skin reaction again today. Interesting that this happens exactly four days after. It must take my body that long for the drug to hit receptor sites? No clue and I'm not a medical expert. Can't wait to get off this stuff!
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