Remicade and weight gain

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New Member

Date Joined May 2010
Total Posts : 11
   Posted 5/8/2010 1:04 AM (GMT -7)   
I've been on Remicade now for three years. I get my infusions every 8 weeks. In this period of time, I've gained 60 pounds. I work out 4-5 days a week and no matter what I do, the pounds continue to pack on. I was wondering if anyone had this problem. Is there anything I can do, short of stopping my treatments? Anyones help would be most grateful.

Regular Member

Date Joined Apr 2010
Total Posts : 72
   Posted 5/8/2010 1:25 AM (GMT -7)   

I am sorry I cant help you on this. All I know is that I am on prednisone and that is certainly a "weighty" med. I was 47kgms before starting this about 4 weeks ago and am now 56kgms. Although I was about 15kgs under my healthy weight range, my weight now looks good to those around. However, I know as I titrate off the pred, I will lose the weight again. I also know some of it is due to fluid retention. So sorry I cant help, maybe if you google the remicade, you may find an indication for the med is increased weight gain. Ask you GP / GI also. Dont stop the treatment though before talking to the medico, just in case of severe repocussions. Im sure someone on the forum who has had experience with remicade can give you more insite.

Good luck

37y/o female from Australia
Dx: crohns april 2010
Meds: Currently : prednisone, calcium, vit d, nexium, probiotics, fish oil

New Member

Date Joined May 2010
Total Posts : 11
   Posted 5/8/2010 1:34 AM (GMT -7)   

Thanks for the advice. I really do hope all goes well with you too.

Regular Member

Date Joined Apr 2009
Total Posts : 384
   Posted 5/8/2010 6:34 AM (GMT -7)   
i wish i could gain that kind of weight
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 5/8/2010 6:59 AM (GMT -7)   
Hi specialknbug and welcome to Healingwell. I am not familiar with the Remicaide weight gain, but just wanted to make sure you do not stop the medication or you could end up getting sick again. Have you had your thyroid checked lately? Sometimes you can be hypothyroid and it will make you gain weight even if you didn't eat at all. Just a thought. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

New Member

Date Joined May 2010
Total Posts : 11
   Posted 5/8/2010 2:35 PM (GMT -7)   
Thanks for welcoming me. I'm not really new to CD, I've had it since 2001, but diagnosed in 2006. But I am new when it comes to talking about it. I usually try to keep it to myself because as much as my family is there for me, they don't understand, and I hate to burden them. So it was nice to come across this site and see people's post and know exactly how they're feeling. So again thank you all!!

Also, what is the deal with the joint pain? My pinkie finger has been real stiff and painful. Is that a side effect of CD or the meds?

Forum Moderator

Date Joined Nov 2003
Total Posts : 7119
   Posted 5/8/2010 8:14 PM (GMT -7)   
A recently published study of people receiving Remicade and Enbrel for spondyloarthropathy [SpA] established that there was significant weight gain in people on these anti-TNF meds. Though the study was conducted with people having a different disease, they were using the same medication.
(search for article # 18381782 )

Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.

New Member

Date Joined May 2010
Total Posts : 10
   Posted 5/8/2010 10:19 PM (GMT -7)   
I too am on remicade. I have been on it for two and a half years now and my treatments are every six weeks. I have noticed that I have gained sixty pounds also since my treatments started, and I am having a VERY hard time losing it. I weighed 150 lbs when I was diagnosed and Gained thirty pounds the two years I was on prednisone and other various pills used to treat crohns. When I started remicade I weighed 180 lbs and then I shot up to 220 lbs. Over the past few months I have been watching what I eat very closely (which is difficult since a lot of the "healthy" foods like salads and fruits are high and fiber and irritate my crohns) and I have lost ten pounds. However, now I have hit a plateau. So I know how you feel!

Regular Member

Date Joined Jan 2003
Total Posts : 224
   Posted 5/9/2010 10:48 AM (GMT -7)   
I gained alot of weight also. I currently weigh the most I have ever weighed at 135 lbs. I am only %ft so that is alot for me. I have spoken with my Dr. about my concern and all he has to say is "better to have a little extra around in case of a BAD flare than to not have enough" I suppose he is right rolleyes but I still am irritated that no matter what I cant lose it, even when I am in remission and can eat healthy.
I started Remicade right after I was diagnosed 9 years ago and have recently switch to Humira due to my body building a resistance to the Remicade.
Good Luck with the Remicade. While it worked it was a miricle for me!!!! yeah
20 yr old female. dxd 2002. previously on 6-mp,Entocort, Prednisone, Flagyl, Cipro, Fiber, and Remicade. Currently on Humira and Elavil. Had first resection in Oct. 2009. (half of colon and some of small intestine)

New Member

Date Joined May 2010
Total Posts : 11
   Posted 5/9/2010 1:44 PM (GMT -7)   
I'm sorry you're going through the same thing, but at least I know I'm not alone. It's very stressful and very depressing. Thank you for sharing that with me.

Veteran Member

Date Joined Sep 2005
Total Posts : 769
   Posted 5/9/2010 4:37 PM (GMT -7)   
This is interesting……… it seems (in people affected) it causes a very slow, gradual weight gain….. I have been on remicade since October of last year and am actually thinner than I was (53kg/116 pounds and 6ft) – but this is due to a recent break-up and sometimes when my stricture gets particularly bad I stick to soft foods.

It seems to be quite rare, anyway, the weight-gain side-effect, and I guess it would be hard to determine whether or not the weight gain is a ‘natural’ thing – that the body is now absorbing nutrients for example – weight gain can be caused by so many things but remi doesn’t seem to cause it all that often? There are so many people in this board on remi and weight gain doesn’t get a mention all that often….. not discounting the theory at all, I’d be interested to know if it does cause weight gain – I like being skinny!

Veteran Member

Date Joined Oct 2009
Total Posts : 1070
   Posted 5/9/2010 8:01 PM (GMT -7)   
Is is possible that you are gaining weight because you are more healthy now? I mean when we are sick we can eat a lot and not gain weight. If you continue to eat that amount with a healthy gut you will gradually gain weight. Just a thought. I have one every once in a while though they are nearly never bright. :)

Regular Member

Date Joined Apr 2010
Total Posts : 20
   Posted 5/9/2010 11:04 PM (GMT -7)   
I hope I have that kind of problem since I've been skinny as a rail for most of my adult life.
Dx with Crohn's Feb 2009, but was told that I had probably had it a long time.
2nd Flare-up Mar 20, 2009 sent me to hospital where I perforated and got emergency ileostomy. Took down ileostomy on Jan 5, 2010. 28 cm active Crohn's terminal ileum. Strictures. Remicade 1 on 19 April 2010. Remicade 2 on 3 May 2010. B12 once a month, OTC Multi, D, C, Fish Oil daily. A pathetic 130 lbs.

Regular Member

Date Joined Jul 2008
Total Posts : 82
   Posted 5/10/2010 9:54 AM (GMT -7)   
I am sorry for what you are going through and I feel your pain. I am not on remicade, but I have the same problem you do. I am on humira and I don't know what is causing it but I have been gaining weight. I barely eat, I am in the bathroom sometimes as much as 15 times a day and no matter what I do I can't lose weight. I went to see an endocronologist and he looked at a food diary I kept and then did several tests. All the tests came back ok and he said there is no explanation for why I am not losing based on what I eat and my bathroom trips. I can't stand to look in the mirror and as if the Crohn's itself wasn't enough I feel like a failure because I can't lose weight. I get so tired of people telling me that I must not be sick if I am not losing weight. I wish I had an answer for you other than to tell you that you are not alone :)
Diagnosed with Crohns in May 08
Resection in November 08
Currently on Humira, Entocort, Xifaxan, Zoloft, Ritilan SR, B12 injections, Calcium and Vitamin D
Married, mother of 4

New Member

Date Joined May 2010
Total Posts : 11
   Posted 5/10/2010 12:49 PM (GMT -7)   
It is frustrating and depressing. My Dr actually told me I needed to work out more. I go to the gym 4-5 days a week, I work my butt off. I wasn't big before I got sick, but now, like you said, I can't stand to look in the mirror. I don't know what to do. Sorry for your pain as well. PLease take care!

Regular Member

Date Joined Apr 2007
Total Posts : 208
   Posted 5/10/2010 4:53 PM (GMT -7)   
I work out 5 days a week and eat an extremely healthy, organic diet yet I gained 40 lbs while taking Humira. Once off of Humira I lost 20 lbs almost immediately, but the other 20 have stuck around. It is very frustrating. Humira also caused me to get high blood pressure, so I had to stop taking itl. There have been studies about weight gain with Humira and Remicade and the weight gain is only happening in those taking it for Crohn's. I don't buy into the 'you're absorbing more nutrition' theory because I gained fat, not muscle. Plus, I eat 1200 calories a day. I think I gained less weight while on Prednisone. I have had every test done for my thyroid and it is fine. No issues with it. I have started doing yoga and interval workouts with aerobics and weights. My clothes are getting looser, but the scale still says 140 lbs. It sucks! Now I am on Cimzia. I have not noticed any additional weight gain with that.

Regular Member

Date Joined Jul 2005
Total Posts : 43
   Posted 7/17/2010 5:50 AM (GMT -7)   
I'm so glad to find this thread because I am CONVINCED that my weight gain is from Remicade. I take it for Crohns and I've read that study about Crohns patients and weight gain - that's me! And I agree with the previous post, that it's all fat, and for me around the middle. I have tried everything to lose it, and can drop maybe 3 pounds and that's it. I've gained about 25 pounds (can't imagine 50 or 60!!), but I'm very petite, so it has destroyed my appearance, and my comfort with myself. I can exercise 60 minutes daily and the scale will not budge. I also have extreme joint pain after three years plus on remi, which I would think it should be helping, but isn't... I'm actually contemplating what going off would be like, because I'm so miserable, but than I'm afraid of the terrible abdominal pain returning...
39, dxd with moderately severe CD 9 years ago. Affects small/large bowels, mainly, but have struggled with Upper GI pain too. Many meds have failed, but no surgery yet. Remicade and Imuran user for 3 1/2 years now. However, I have "new" arthritis symptoms, plus weight gain. Have one great husband and 6 great kids, including two sets of boy/girl fraternal twins!

New Member

Date Joined Jul 2010
Total Posts : 1
   Posted 7/21/2010 2:46 PM (GMT -7)   
I've been taking Remicade since October of 2002. It was my last option before surgery. From day 1 on the drug, I started to feel better. In the time since then, I've only had two major flare-ups - one immediately after my 3rd session in December of 2002 and then in November of 2004.

During that time, I went from a sickly 160lb frame (I'm a 5'10" athletic framed male) to a chubby 215lb frame. In 2005, I did Weight Watchers and lost all of the weight within the year. However, to do so, I was only able to consume maybe 1300 calories per day at MOST. Because I "looked" good, my dr kept calling me the poster-child for how Remicade works. However, I was spreading my sessions from the suggested 8 week intervals all the way out to 14-16 weeks. (Many times, I would schedule it for 12 weeks but would have a respiratory infection and have to push it back a few weeks to let that clear.)

The reduced caloric intake, I believe, led to not only fat burning, but muscle wasting. I was able to keep my weight under 175 till about two years ago. Since then, its gone up to about 190. How has my diet changed? For one, I don't starve myself anymore. Before, breakfast and lunch were tiny if even existent. Now, I at least leave the house with a coffee and a piece of toast. Lunch is still usually a flavored water and a nutrigrain bar. I'm probably closer to 1900- 2000 calories a day. My Remicade sessions are also closer together now. I get tired more often and when that happens I know its time for an infusion. Most of the time, its right at 8-9 weeks now.

I don't know how to feel about the weight. I'm 33 now and want to look good. But I also want to be healthy and don't want to have to worry about my intestines trying to kill me. My doc just thinks i'm eating more and not exercising enough. I'm not so sure. My fat build-up is just like everyone else has been talking about...its right there around my a spare tire. When i get infusions now, I know my weight will jump 5lbs almost immediately.

I'm torn with what to do. I hear that Humira is an option. Remicade, however, has been a lifesaver. I know that. I probably have no right to complain about a few extra pounds.

Regular Member

Date Joined Apr 2010
Total Posts : 76
   Posted 7/26/2010 1:27 AM (GMT -7)   
So glad I found this thread. I have just had 2nd infusion of Remicade and have already noticed a 'tyre of fat' around my middle. Seemed to appear overnight and I am eating no differently. Made me feel really depressed especially as the drug hasn't made any difference so far, I know it is early days but I can do without the added stress of FAT. Dosen't help when I still feel unwell and cos I am carrying weight (pred face too) everyone says how well I look.

Regular Member

Date Joined Feb 2010
Total Posts : 40
   Posted 7/29/2010 4:39 PM (GMT -7)   
Have been on Remicade for about a year now, and lost about 8 pounds; of course, my husband left me in March, so that might be the cause.. Don't have to cook anymore, tho :)

New Member

Date Joined Jul 2010
Total Posts : 3
   Posted 7/29/2010 5:07 PM (GMT -7)   
I gained a ton of weight on prednisone. Now I am off the prednisone and only on remicade and the weight is not coming off. So I would guess the remicade is a problem. Also, my joints are so painful. It has gotten so bad (having trouble opening doors and bottles etc. plus it is hard to walk because my feet hurt) that my doctor is going to switch me to humera. I need to read up on it to see if that is what I want to do. On the plus side, in January a fistula opened up (that was fun) but the remicade seems to have closed it. Hopefully I do not get another one!

Regular Member

Date Joined Jun 2009
Total Posts : 354
   Posted 7/29/2010 6:46 PM (GMT -7)   

wow looks like you got tons of post!!with remi I never gained weight on, however I was only on it for a year and few months due to the arthritis is caused (I went crippled) which is what your feeling right now. the reason is because your body has to much anti-bodies which is a typical side effect with CD patients after reading up on it due to the rat DNA instead of human DNA (which is Bull crap in my opinion since I'm currently on humira which IS human DNA and I've got the arthritis again) speak with your doctor about taking imuran or something of that family to help counter act the anti-bodies.
I wish you the best of luck, I hope your able to stay on it, get into remission and NO arthritis.

Tracy from montreal. Dx with Cd 7 years ago but un-Dx for 10 years. Meds currently taking;Imuran (1 and half tab daily)Humira (bi-weekly) pentasa, been on prent 4 times but horrible side effects doc wont use this on me anymore. Humira has put my CD into remission, after using remicade for a year and half which caused remi induced arthritis. I am currently (most days) arthritis free. Currently dealing with endometriosis.

neon cactus
New Member

Date Joined Apr 2008
Total Posts : 9
   Posted 7/30/2010 11:15 PM (GMT -7)   
I started out 5'8" 140 lbs ( female ), and after a couple of Remicade infusions I gained 15 lbs. I was switched to Humira, and gained another 25 lbs in 6 months, consuming less than 1000 calories a day. :( I'm very conscious of what I eat, and now eat very little - much less than I used to even when I was 'dieting for weight loss', since I cannot deal with any more weight gain. At my most recent Rheumy visit, the doc remarked that weight gain was a very common side effect for those on aTNF's. It is extremely discouraging - none of my clothes fit, so I had to buy new and go up several sizes, and I feel, and look, like a blob. And the aTNF's do *nothing* for my overwhelming fatigue. So depressing.
Ankylosing Spondylitis & Crohns

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 7/31/2010 5:31 AM (GMT -7)   
I agree with Funguy. I started to gain weight when I started to feel better so I cut back what I was eating. Especially the high starch foods that agree with me when I am feeling bad. Didn't gain after that . Also now that I am on insulin I am losing more weight because I am not hungry all the time. You guys may want to have your blood sugar checked. I never thought I would have to deal with more than one major illness at a time but its part of my life now.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

New Member

Date Joined May 2011
Total Posts : 1
   Posted 5/22/2011 10:43 PM (GMT -7)   
OMG! I am so glad I found this page! I've been on remicade for 4 years now and I have gained alot of weight. I know it has to be the remicade because when I started getting my infusions I started gaining weight. I talked to my doctor about this, but she told me that I need to try and lose weight, stop eating so much,workout, and then she told me it's not because of the remicade. I know deep in my heart I do not over eat!! I am a healthy eater. Also I am a active person. I am never sitting down. I think i'm gaining weight because of this stupid medicine. But I can't stop taking the medicine because then I will get sick.
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