Weight Gain and Biologics: The Battle of the Pudge



I’ve known from the beginning that Biologics can affect your weight. When I was on Enbrel, I couldn’t keep weight on, and looked anorexic despite eating like a horse. When I switched to Humira, I started gaining weight. I, who had never before spent much time past a size 6, became a 10. After years of being  literally skin and bones, it suited me just fine. 

And then the gaining continued, until finally settling around a weight that requires a 16 pant. Never having been this size, I feel it’s important to mention that I’m probably more like a 14, but when you sit down all the time, the mid-region requires a little extra room. It was also scientifically kind of interesting, as I have never eaten a more healthy diet, free of crap.

So where was the weight coming from?


I figured it was a combination of medication, middle age, and menopause each contributing to add some of the pudge. Until this week, though, I didn’t know how big a role medication played in the weight gain.

And then The Original Dragon Mother mentioned a physician’s blog post, I got the link, and the light bulb went off.

In a follow-up to a post asking the question whether these medications cause weight gain, Australian physician Dr. Irwin Lim presents a literature search that indicates that yes, they do. In fact, there are numerous journal articles about studies indicating that this weight gain happens.

TNF inhibitors, such as Enbrel, Humira, and Remicade, appears to cause weight gain and an increase in BMI. Moreover, they seem to specifically cause fat gain in your stomach.

No sh*t, says my size 16 pants holding in my pot belly (aka Lucy’s favourite pillow).

 
Dr. Lim points out that there doesn’t seem to be any studies on the role of diet and exercise in holding this weight gain. Purely anecdotally, I can tell him that my diet has been very much the same for several years, and nonetheless, I gained weight.

(In making this statement, I am not including the last couple of months in which an alarming amount of crap has entered my diet, with some degree of subsequent addition of… well, addition. This is easily understandable, however, and when I stop eating all the crap (soon…), it will hopefully go away again)

The medication -induced weight gain is extremely frustrating. In the beginning, I enjoyed feeling more substantial, but as I repeatedly had to buy new pants, I stopped finding it quite as amusing.

It is extremely frustrating to not lose weight despite eating a largely healthy diet. It is also extremely frustrating to, when you cut down on certain things within that diet, to not see your weight budge at all. And it is beyond frustrating when your disability and chronic pain levels prevent you from exercising.

Most of the time, I try not to care. But the odd time when I look at myself in the mirror on the way to the shower, or see a photo that especially shows my head to resemble a bowling ball, it is difficult to incorporate this body as being me.

And then I remind myself that my blood tests show I am healthier than I have ever been. And I also remind myself that the medication which has made me so pudgy is also holding my RA at bay, and enables me to live this life I love.


  
And in that context, who cares about the extra weight?

Comments

cathy kramer said…
OMG!!!! My first year on Enbrel I gained around 15 pounds. I've since added more, also thinking it must be menopause because it's in my stomach and my rheumy denied it could be related to biologic. I've tried losing weight with diet and exercise, with awful results.
Wheelchair said…
Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Wheelchair Lightweight

Keep Posting:)
carlascorner said…
Sheesh! If there weren't enough bad news about RA and the drug side effects. I figured my weight gain was due to the lack of activity caused by surgeries every year since I was diagnosed. But you're right. We need to keep things in perspective.
Sydney Harper said…
This came at the perfect time. I was diagnosed with RA last year and just started Humira a few months ago. Before my diagnosis, I had lost quite a bit of weight for me. I went down a clothing size at least. Since I've started Humira, I've put some of that weight back on and it came on suddenly. But just last week I started noticing I had belly flab, or more belly flab. I'm hardly the picture of physical fitness but this was new. So I decided I had to quit wallowing around and do more exercise. Hopefully that will keep the flab at bay. Humira has been good for me so far. If it comes with some additional pudge, I guess I'll deal with it.
Jen Workman said…
I empathize completely as I am on my fourth biologic and the weight gain has been substantial. It is also in tandem with the Cymbalta I was prescribed for Fibro. So...dealing with A.S. and Fibro and weight gain have presented many challenges. And I too need to remind myself to be grateful for each and every day..it can be tough sometimes.
Thanks for expressing so eloquently what many of us feel!
Jen Workman said…
I empathize completely as I am on my fourth biologic and the weight gain has been substantial. It is also in tandem with the Cymbalta I was prescribed for Fibro. So...dealing with A.S. and Fibro and weight gain have presented many challenges. And I too need to remind myself to be grateful for each and every day..it can be tough sometimes.
Thanks for expressing so eloquently what many of us feel!
Lori C. said…
Hi All! So happy to see that I am not the only post menopausal woman, with the dreaded pudge, who has noticed a significant weight gain with biologics. About 2 years ago, I was seeing a rheumatologist who prescribed Remicade for psoriacic arthritis. My psoriasis cleared up instantly! But, I immediately noticed a "blimping up" of my weight and blood pressure. And my fingernails were starting to peel off from the cuticle. The doctor told me it was "NOT A BIG DEAL". And the nurse told me I needed to leave my house earlier, so,that the traffic didn't raise my blood pressure.. Really?! After noticing even more horrible side effects, I left that doctor because he was not listening to me. I was in more pain than before the Remicade. The new doctor put me on Enbrel. It's working for the psoriasis, but I am continuing to gain weight. I have cut down on my food intake (I'm a total sweet tooth) and have started exercising more. I feel better because the medication is taking care of the aches and pains, and my psoriasis is going away, though slowly. I guess it's going up that next size, until I can get this under control. Thank you all for sharing your stories. It is so nice to know that there are people out there like me.
Kirsten Vega said…
This comment has been removed by the author.
Anonymous said…
I have had moderate-severe plaque psoriasis for the past 29 years. I am currently 47 and my skin is probably 97% better since using first enbrel and then humira for the past 10 years. I have now decided to stop the biologics because I believe that it has caused significant weight gain especially in my stomach. I also believe it has caused my IBS as well. The weight gain was slow and I was always blaming myself, stress or hormonal imbalances. I would ask my dermatologist if the injections caused weight gain and he would just respond with, "no". I just went to a new dermitologist and she told me not to inject in my stomach that it could cause digestive issues. I already have digestive issues and I believe it could be from enbrel and humira. I told the new dermitologist that I wanted to try creams, lotions a sprays again to see what happens with my skin, weight gain and digestive issues. Can anyone relate to this?
sue letchford said…
I have RA and was put on Humira in 2013 @8.5 stone(grew up with lbs & stones)Began gaining weight gradually and was told it was NOT the biologics.Humira was wonderful for about 9 months, was then switched to Enbrel.which has continued to work along with the weight gain!!!!I am now 2 stone heavier all hanging around my middle = 3 sizes larger for clothes.
I find it totally horrible having all this flab + having very little $ to buy clothes that fit
RA is depressing enough to live with without turning into a blimp AND having this side effect denied by rheumatologists........"it is menopause"..........well that was 15+years ago??????And then my physician told me to "try shapewear"!!!!!!!
I am now heading for cancer treatment.......also caused by biologics?????????It is so good that it is FINALLY being said out loud that these drugs cause weight gain! And nothing you can do will work to move it...................

Anonymous said…
I am so thankful that I came across this website! I started Humira about 3 months ago after being on Methotrexate for 8 years (off and on) and I have gained almost 20 pounds! I am not all that small anyway so this has affected my health by having all this extra abdominal weight (which is where I gained pretty much all of it). I have asked my Rheumatologist and she said that she can not see where weight gain is not a side effect. It is such a relief to know that I am not alone and other people are experiencing the same thing.
Anonymous said…
I was diagnosed with acute ulcerative colitis almost two years ago. I was put on simponi which work great at first and I did notice I started getting the belly fat. Im sure the steroids didn't help that at all either. The Simponi (I liked I could do the injects at home) quit working so the Doctor put me on Remicade. So now I have to go do three hour infusions and on the first one I started to break out in hives. I've only done two infusions so fare so its too early to know if it will also cause weight gain. But for a person who has struggle with her weight for the last 20 years, knowing your medication may add to that isn't the best news. I pray that all you other autoimmune suffers get to feeling better.
Anonymous said…
Thank you so much for writing this. I have Ulceratice Colitis and have been on Humira 2 years and am not even menopausal but at 34-35yrs of age I started at size 8-10 and am now size 14 in only 2 years with zero diet change and only eat fruit vegetables and chicken or fish and no fried food, no fast food, I walked daily 2 hrs per day - nothing gets rid of the weight iny middle. I wish everyone strength to carry on & feel good regardless.
Anonymous said…
I too am very thankful to have read this article and others' comments!! I was diagnosed with Ankylosing Spondylitis (a form of RA) over the summer. My rheumatologist put me on Humira injections in August 2016. I felt incredible pain relief immediately (within two days of the first injection), and I was thrilled to have my quality of life back. However, in the past few months I have absolutely noticed weight gain, especially in my belly area. I had to go up a pant size, and based on others' comments am worried I will be forced to increase sizes even further the longer I am on the medication. Nothing else in my lifestyle has changed...I still workout 3-4 times per week and eat very healthy. Although my pain was quite severe prior to taking Humira, the weight gain has made me feel awful/anxious. Maybe it sounds vain, but I work hard to look and feel good in my own skin, and I am really struggling with how to proceed. I asked my rheumatologist if weight gain is a known side effect and she gave me a very short response: "Only to the extent that people feel better, and any weight loss that came from chronic illness gets better." Well, I don't believe that...especially after all of my online research about others' experiences. I have anxiety about my weight gain and need to feel like myself again. For this reason I decided to go off of the Humira. I don't want to live in pain, but I can't live feeling so insecure and anxious about my body either. I am simply not going to settle for going up 5 pant sizes! Has anyone else gone off of biologic treatment for these reasons, and have you found any other solutions that helped you live with less pain? I tried some natural supplements before going on Humira, and my pain was still very high. Any suggestions??
Unknown said…
Yes, i have gained 30 lbs since starting humira in August of 2016. All of the weight is on my belly and face. I am miserable, cant loose it, for this reason I am stoping humira.
Anonymous said…
I am wondering if anyone has had any success losing the weight. I too have gained considerable weight since being on biologics. I started on Humira, then went to Cimzia and now am on Remicade. I have a wardrobe full of clothes I can't wear and a healthier diet than anyone I know. I eat better now than I have ever in my life. I don't do a lot of exercise but try to stay active. A colleague commented the other day how much energy she thought I had. I saw a dietician who recommended "tapping" (Emotional Freedom Technique) as a possible solution. This did not work for me, as overeating bad food is not my problem. I also have coeliac disease, so most chocolates cakes and treats are off the menu for me. I am really struggling with this. I know that going off the biological is out of the question, without it I cannot function, but as I continue to gain weight each month I am terrified of the health risk of being obese.
Anonymous said…
Trina I have Crohn's and I am on Remicade. I'm not sure if I would have opted out had I known about the weight gain up front. I was never thin, but I packed on an extra 30 pounds since being in the infusions. No matter how I cut back on food, drink water with lemon, spike my food and drinks with apple cider vinegar, replace a mean with a protein shake..NOTHING WORKS. So I decided to just live with it. I still can't exercise due to the pain in cause but the meds cut my number of trips to the potty in half and stopped the dreadful fistulas. So call me Shamu as I keep enjoying the relief!
Anonymous said…
I have gained 15 pds with no changes to my diet and more exercise that pre enbrel. I am starting to get worried. I hope its stays at 15 pds. I eat healthy and walk everyday. It seems contradictory that what allows me to walk is also affecting my health. Doctor and pharmacist deny any links to the meds. What else can I do besides diet and exercise?
Christina Moxie said…
Let me chime in, also. I have been researching weight gain and biologics because my specialists say that it's not the drug causing me to pack on the pounds but thanks to this and other blogs, I can see that the real-life experience of people on them is refuting my rheumy/dermatologist's opinions. I have been on Stelara/Ustekinumab for over a year and a half now (started in June 2015). My dosage was doubled a few months back and before that, I'd gained about 15 lbs. Since the doubling, I've gained 10 more. It's out of control! I take the Stelara for psoriasis and it's been very effective but my PsA has gone through the roof and the enthesitis is out of control (my achilles tendon, for instance, is like a wee purple balloon and it hurts like hell to walk). Therefore, I'm researching a TNF inhibitor (as opposed to an Interleukin inhibitor) because my rheumy says that it will be better for the arthritis. However, my hematologist says the Stelara is a godsend because my chronic severe iron deficiency anemia is actually no longer forcing me to have infusions every 5 months... because my GI specialist confirmed IBD and possible Crohn's, which causes blood loss through the gut/intestines. So, now I'm not suffering the bloating and gut pain or anemia but I've gained all this weight and feel So Freaking Tired and the joint/tendon inflammation is killing me. So? LOL. Gotta find a new biologic that treats PsA, Crohn's and psoriasis but doesn't cause weight gain or depression (an issue with Stelara). Any input?
Christina Moxie said…
http://www.bjchealth.com.au/connected-care/tnf-inhibitors-cause-weight-gain-fat-increase If anyone wants further reading.
Patricia Young said…
I am so glad I found you. I am dealing with all your issues alone. NOT ANY MORE.
I have felt so shamed and guilty. I am so grateful to listen to so many voices that are going through everything I am. RA, Menopause, Battle of the Bulge while eating healthy while my friends have fun and the hips still spread from my seated view.
I am going next to Amazon to buy your book and I will check in with you regularly.

YOU ARE NOT ALONE!
Patricia Anita Young, Writer
KG said…
Glad to know what's causing my problem. I was told that embrel wouldn't do that. 15 pounds later, up one size and a stomach that's the entire muffin not just the top! I had managed to lose 30 pounds but now feel like a big fat failure. Don't know if I can get off the embrel or not. Don't want to put on any more weight but I do like to take trips with my Huston our motorcycle. The weight gain makes it harder for him if I gain weight .What a mess. Thanks for your info and good luck.
Anonymous said…
I am male and am on Enbrel ,Gained at least 30 pounds,It started within 2-3 weeks of the first shot.
Asked the Doctor about it was told that it was not the cause and I just need to watch what I eat,
Sad thing is I have not gained weight in years until now.
The choice for me is feel a little better and be extremely overweight or feel really bad and healthier.

Thanks everyone
Vicki Luna said…
My Rheumatoligst may start me on Humera next week. I am newly diagnosed and just don't understand why they don't tell you weight gain is a side effect. I makes me wonder if they keep up with the latest findings. Am I being too cynical? It kinda makes me not trust what they say. It seems that if a person knows weight gain is a likelihood why not offer countermeasures to the patients. I look forward to the pain relief but I already have a weight problem. My problem is pain is hard to deal with but the possibility of inflammation of vital organs really scares me, how do I balance the benefits verses the risks?
Anonymous said…
I have been on Remicade for 2 yrs but so unsure if weight gain is because of just Remicade or some recent depression. I exercise @ 5x a week, try to drink close to 80z of water and it does not seem to do one thing.
Chelsea Roy said…
I posted above back in the Nov/Dec timeframe that I was going off of Humira injections due to weight gain (against my rheumatologist's recommendations). I continually asked her for natural solutions, and she simply told me to stay on the Humira. Again, I admit that it worked, and I was pain-free within days of my first injection. However, there was no denying my pants getting tighter when nothing else in my lifestyle had changed. I have always worked out often and eaten pretty darn clean. I did a lot of research on my own, and almost tried a gluten/dairy free diet, which would have been very difficult for me. However, before it came to that, a friend told me about the effects of lemon juice in water every morning first thing before you eat/drink anything else. It is a known remedy for inflammation...something about the alkaline in it. I also take a fish oil supplement every day, but the lemon juice in water was the true game changer! Within two weeks, I was pain-free once again with NO BIOLOGICS in my system. It is so simple/easy/cheap...it almost seems too good to be true. I don't even use fresh lemon juice. I buy it in the big bottle sold in any grocery store for cooking. A few table spoons in an 8 oz glass of water every morning before I consume anything else has worked wonders! I hope others will try this and have the same success because I am so thankful I found a natural solution. I have very little if any pain now, and have been going strong for a couple of months since I started the lemon juice remedy. I am back to my normal weight and my clothes fit great. I feel like myself again, and it is awesome. This may not be such a quick and easy fix for everyone, since all body chemistries are different. It may take some time and hard work/determination to research and test out different solutions to find what may work for you. But keep trying! If this many people are seeing weight gain, it's pretty likely it is the biologics causing.
Lois said…
I have been on Cosentyx for 3 months. My rhuemy said to use it instead of Humira which I was on for almost 7 years. I was on Enbrel a couple years before that. My psoriatic arthritis was worsening so the doc thought I should change up my med. I too have gained weight (30 lbs) over the last 9 years. I have never had a weight problem. I eat very healthy and walk a lot. I agree the biologics cause weight gain. I am going to try the lemon juice in water. Also have decided to stop my meds. I have a light therapy machine in my home and that treatments works for me. I like what I have found here and learn from what others write.
Page's Page said…
Thanks so much for this information! I truly believe most Doctors, even the good ones, don't know the side effects of biologics. I have Crohns and was on Remicade, almost died! Then Cimizia with some relief, now I've been on Humira for 3 years and have gained 20 plus pounds and can not get it off any way I try!! High blood Pressure as well and never had blood pressure issues in the past. I've been doing really well on the Humira. I chose to stop taking and my Doctor freaked out!! Wants me back on ASAP, so I guess I'll do it at a reduced dose though, I was a once a week injection! So glad to hear from other women having this problem, I do agree it is better to be healthy and symptom free to enjoy my life!
Anonymous said…
I would love to know if anybody has NOT put weight on or have managed to diet it off
Anonymous said…
OH WOW, I am so happy to have found this BEFORE I visit my doc again. I have been on biologics for about 8 months. The first time, no change...after that each and every time I go I end up with another few lbs. I belong to a gym and work out (yoga, water WRTX, and swimming) 3-5 times a week. It depends on how I feel, and sometimes I admit it's a slow burn but I'm still there. I also walk my dogs.

I do not eat all that much, as a matter of fact, my family keeps asking me why I'm not hungry. And yet I've put on about 15lbs, it is mostly in my belly. I'm not a vein person, but this is incredibly uncomfortable and my blasted clothes do NOT fit. I hate this.

But thanks, I'm sorry for all the rest of you who are having this problem too. But I am happy I can fully believe (unlike my doc) that it is the meds doing this to me!

Score one for the medicated!

Anonymous said…
I started cosentyx a year ago. I was 80 percent covered in psoriasis and had the onset of psa. I noticed weight gain the first month on cosentyx.. I expressed this to my Rhuemy and was consistently told it was not the medication. At the time I could only find limited reviews on cosentyx. In total I ended up gaining 16 pounds. Mainly around my thighs and belly. I have a small frame so the weight is noticeable. I count my calories and work out 5 times a week. I tried everything to get the weight off. Calorie intake vs calories burned. I then decided to do a 4 day fast. I did it with a group everyone I. The group lost weight, I gained 2 pounds while on the fast. Cosentyx is a great medicine for what it is meant to do. It cleared my psoriasis and I was pain free. However the side effects were too great in my case. Low self esteem, lethargic , depression from how I felt. I was a watch owl on my food and weight. Not so much for vanity reasons I felt so uncompfortable day in and day out, I also became extremely emotional. I have been off it 2 months. It's been a struggle to get the weight off but it slowly is. I'm sharing this as it may help someone. I thought I was going crazy. I had my dr saying eat better yet I was eating like a heath guru and kept getting bigger. It can be emotionally breaking in anyone.