Can't lose weight!

[Hermione]

Hi all, I'm new to this forum. I stumbled onto it while I was searching on google for answers.

I was diagnosed with crohn's disease in June 2012. I have been on prednisone, then imuran, and my doctor switched me to humira when the imuran stopped working.

I've been off prednisone for over a month now (when I started humira). I've gained 20 lbs in 2 weeks after starting humira, which left me with stretch marks all over my breasts, tummy and thighs. I have gained a total of 45lbs ever since I started treatment back in June.

Now I have went up 2 pants sizes, and nothing fits anymore. It's really depressing. I am eating healthy and trying to exercise as much as I can. (Not easy with a 9-5 job which has a 3.5hr commute every day)

I am always tired (it's not rare that I can sleep 11-12 hours) and I get more headaches than I used to get. My feet and ankles are squishy, and if I've been laying down or sitting for awhile, it hurts when I get up. I need to walk around to make the pain go away.

Has anyone had the same problem I have? It seems that everywhere I look, people are losing weight on Humira, not gaining and maintaining!

Any advice on what else I can do to go back to my normal size?

Thanks a bunch :ghug:

(I have a doctor's app next week so I will mention all this to him)

 

[MikeinBklyn]

Hermione,

I have been on Humira for three years now, I too can't lose weight. I feel so good that I eat everything, no restrictions. Plus, I love to eat!

I am the heaviest I have ever been. Now, I am having trouble with my knees and going up stairs.

For me I do not think it is the Humira, rather a voracious appetite due to taking an antidepressant med.

However, I did buy a treadmill and I am starting to watch my diet. I just crave fatty/sweet foods.

Humira needs time to set in, and I speculate your body needs time to get used to it. Give it some time before you freak out.

Best of Luck

 

[BeccaH]

I would recommend calorie counting for a week, but not dieting. Be really honest with yourself about what you eat and log it. You will then be able to identify whether you are eating too much or too little, it also helps you to notice the ingredients in food. This worked for me.

This will also give you something to refer back to when you visit your GI. I hope this helps.

I use www.myfitnesspal.com as you can get it on your phone or computer.

 

[dreyes7373]

I just started Humira and have gained 10 lbs. I was hoping to find that maybe after being on it for a while my weight would come off. But it doesn't seem to sound like it I believe at least for me this has nothing to do with diet. 12 hours after my first set of injections I gain 5 lbs and than another 5 before the second. I also have injection site reactions. Let us know what you doctor has to say.

 

[Hermione]

I already use myfitnesspal and calorie counting, and it doesn't seem to help at all
No reactions on the injection site though, so I'm lucky on that aspect.
I'm seeing my dr on the 1st, so hopefully he will have a plan to fix all this

 

[Sookie's Mom]

OMG@! I'm supposed to start Humira in a few weeks and now I'm really reconsidering. I have worked really hard to lose almost 100 pounds; some by design, some by Crohns. Either way I don't want to gain anything. Yes, let us know what your doctor says. And for the record, I do believe it's the Humira. We all know ourselves and what we're eating or not. Hang in there!

 

[dreyes7373]

I can understand, I have hosimotos as well and it has taken me years to lose the weight I had gain from that.And I am the one person who has constipation with the Crohns But I keep tell myself its ok, people have it much worse. But because of the reaction to the injection sites, they are giving me one my try and they might take me off of it.

 

[Rachael P.]

I thought I was the one person that gets constipated with Crohn's. I have gained some weight but I attribute it to a larger and more varied diet.

 

[Seabiscuit]

Good to join forum. Support/information is very important with these challenges. I was diagnosed in 1974 thru extesnive (5+ hrs) surgery with Crohns. Have had multiple resections since (last one March 2013) and residuals over the years. Many short flares and secondary bleeds resulting in brief hospitalizations for stabilization. Gall bladder gone, appendix gone, 64+ kidney stones, etc etc.
Main concern now - after years on Prednisone on an off with varying results (and failed results on all the traditional rx regimens on the books), I am doing generally "ok" with sx of blaoting, 5-10 BMs daily, and right flank pain that is episodic. My GI doc and professional friend/colleague now wants to start me on Humira. I have researched most of the 10 biologics and they all have serious side effects and issues. Remicadee and Humira at least have some appreciable track records and research lines going, compared to the recent additions, like Cimzia, etc. However, I am SERIOUSLY concerned about the range of potential symptom side effects that may await me when I start the protocol. I have my technical and non-technical questions ready for the "talk" with my GI doctor Monday. Taking 20mg (down from 40 over last year) of prednisone still. Asked to be weaned off and also planning on requesting a "drug holiday" for a few months, while I get back to work and even entertain a vacation out of country (planned and paid for last year). Any suggestions from this group about questions I should ask, what I should expect on first doses, regular (if any) lab work-ups that folks schedule to monitor the progression of the protocol and it effects on your body, etc.? In advance of your replies, thank you. I PROMISE not to be so wordy on future posts. This is my first time out of gate on such a forum. Stay well everyone - AND - be assured of my prayers (seriously) for ALL of you and "us" as we negotiate our lives and challenges with CD and UC.

 

[Jaiyce]

I thought I was the one person that gets constipation with Crohn's!
Please let us know what your dr says. I too have worked really hard to lose 90 pounds and will not handle gaining weight well. But then again this pain is pretty wretched. I am to start Humira right away but am in a battle with my insurance company right now as they insist I continue with Imuran even though I had a severe allergic reaction. Best wishes

 

[Hermione]

Got back from my appointment. My only prescription was stretching! Stretching and yoga and wii fit is supposed to help me lose weight. And these symptoms I have are apparently tied to being overweight.. we'll see!

 

[BeccaH]

Sounds like they have tried to fob you off :confused2: So sorry x

I think even if the weight gain just happens, I don't think there is a quick way of loosing it unless it is cause by meds and you change them.

When I struggled with my weight a few years ago I bought Paul McKenna's, "I can make you lose weight". I would say that my weight loss is not wholey attributed to this, nor do I have a strong belife in hypnotism but the theories and suggestions he makes can help and it makes sense.

All the best xx

 

[Bryonyboo]

I have been on Humira for a year now, and over that time I have struggled to lose weight, diets I try that have worked before have been much less effective. I never thought about it being related to Humira, but sounds like a possible side effect!!

 

[Scaryman]

So you think some people take longer to drop the steroid water gain? Just wondering how much could be steroid related and how much if it humira. I know that I have been stable with my weight and I've been in humira 24 weeks. But my appetite is wacky sometimes hungry, sometimes I can go a day or so without eating. Keep in mind surgery is coming up for me this month.

 

[Miss Underestimated]

I've gained weight on it too. Can't stop eating. I think I need to up my activity level, since dieting is out of the question. I'm hungry all the time!!

My weight is not from steroids - I think that comes off with time, but if your appetite is like mine, you'll be gaining regular weight as fast as you lose the steroid weight. Look to see if you're losing the other symptoms of steroid use - moon face, swollen ankles, etc.

 

[Clare Lack]

My daughter is 16 years old and had crohns for 5 years. She was on humira for 6 months and gained 2 stone. We spoke to her consultant who said that the medication does not affect your weight. She had to stop humira due to a reaction to the injection site. Within about 3 weeks she lost a stone in weight. So we strongly believe it was the injections causing her weight gain. Hope this helps. xx

 

[Hermione]

My appetite is pretty normal. I don't have moonface or buffalo hump, but my ankles were swollen. They aren't as bad now, but the weight is still there!

 

[natatak227]

Hi all!
I'm on Humira too, but did actually lose 60lbs after starting it. I wanted to respond to this forum though, because before I was diagnosed with Crohn's I actually gained about 100lbs. What my docs concluded was that my body was trying to hang on to anything I put into it, because I was in the bathroom 15x/day. Once I got regulated, the weight started to come off. It is the typical thought that a person with Crohn's disease is skinny and can't gain weight. What I've found out recently is that at least 30% of people with Crohn's actually have trouble losing weight. As if we don't have enough to worry about!!!!

 

[JAY82]

Well for some reason i am backwards from everyone else.. I have been on humira for just over 2 months now and have actually lost weight, granted i am overweight to start with, but within the last 2 months i have dropped about 20lbs and i'm not trying too.. Started coming off real fast at first, within the first month i lost 15lbs.. It has slowed down.. I am quite tired at times on humira and have noticed i get more headaches but other than that it has been good.. Could stand to loose another 40lbs though.. Was about 270lbs before starting the humira, down now to just below 250.. But on my frame i can't imagine being below 200, i haven't been that small sense 10th grade..

 

[my little penguin]

Humira here for my son.
No weight issues - he is at the age where he is suppose to gain

 

[SusanB]

Scareyman, hi, can I ask what your strange reaction to Imuran was?
I didn't get along with it either. Will be trying the humira soon.
Thanks,
Susan