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Posted 2/8/2016 1:47 AM (GMT 0)
Did any of you notice any weight changes (gain or loss) with any of the medications you have been, or are currently on, for Crohn's? Like Cimzia, Remicade, Humira, Asacol, etc.. ?
Posted 2/8/2016 5:34 AM (GMT 0)
I've been on pred many times but only once did I notice a weight gain (about 9lbs). No other weight change due to drugs for me ... Only excessive weight loss due to flaring.
Posted 2/8/2016 1:32 PM (GMT 0)
I put on a ton of weight from pred, but I think it's from the back and forth of flaring, then pred. It's like having an eating disorder. My metabolism is now pretty shot, and I really, really struggle with weight loss.
Posted 2/8/2016 2:03 PM (GMT 0)
I was obese when I was diagnosed. When I started Remicade the weight came off. First time I was ever normal weight. And I have remained that way.

Some members have posted about gaining while on the biologics.
Posted 2/8/2016 6:42 PM (GMT 0)
Only weight gain with pred. And not straight away. I didn't put on any weight when I was only taking one course a year, or every other year. It was when I went on pred more or less continuously for 18 months that I put on a lot of weight before my first surgery and actually ended up being overweight.

I lost little of that weight after surgery - maybe about 5 or 6lb - despite coming off Pred completely. Didn't lose any more weight until after my second surgery. Have lost almost 2 stone (28lb) due to a combination of the surgery itself and subsequent flare-up. Overall I don't eat very much and feel like my metabolism is shot to pieces - I would gain on 2000 calories a day for sure.
Posted 2/9/2016 2:09 AM (GMT 0)
I've only been on Prednisone during obstructions when I was only on a liquid diet so I always lost weight. I've lost around 25 lbs from the time I was diagnosed in 2007 until now. I used to be overweight, so I am in the normal range now. If one more person tells me I look great for age 57, I think I'll scream. The sicker I feel, and the more I lose weight, the better people think I look. Too small of a perk for the price I paid for it!
Posted 2/9/2016 2:28 AM (GMT 0)
I gained a few pounds once I was on Remicade, but I don't "blame the medicine" exactly. I attribute it to the fact that I had constant diarrhea before starting Remicade, and once I was healthier and food stayed in me for more than an hour, I was able to retain more nutrients and gain a few pounds. For me it was a good sign. :)
Posted 2/9/2016 7:51 PM (GMT 0)
I only notice weight gain from prednisone. I was average weight when I first started noticing Crohn's symptoms (5'6", 135 lbs and in good physical shape) and feel like my "normal" weight has slowly been decreasing as I age (I'm now pretty consistent around 120 lbs). I can't tell if it's from Crohn's or not anymore. Both of my parents are thin, but very in shape. I am thin but not at all in shape (meaning I have a lot less muscle mass), so I can't tell if they didn't work out would they have my body type as well?

I do agree that this disease messes with your metabolism, almost like you have an eating disorder. When I got off TPN after surgery my weight went from 110 lbs to 145 lbs in 6 months, the heaviest I think I have ever been. Just as I was starting to accept this new weight and buy clothing to fit my new figure, it seems like my metabolism sped back up and I lost 25 lbs without even trying (I have quite a few pairs of nice jeans that no longer fit, its a shame really). This can become frustrating and impact my self-esteem at times, but I try to remind myself that I have a chronic illness and need to focus on being healthy, not what I look like in a bathing suit. I think I am good about it most of the time, but I'm only human . . .
Posted 2/9/2016 8:45 PM (GMT 0)
Prenisone gave me moon face but I didn't gain weight. I ended up looking like a lollipop! I have so many different sizes in my closet, I don't want to throw anything away because who knows when I may be that weight again. 10 years ago before I was sick, at almost 5'7" I was 150. I am now down to 105, but I'm pretty sick right now and waiting for my resection surgery.
Posted 2/11/2016 2:32 AM (GMT 0)
I lost like 10 lbs in about 10 days on Flagyl yuck!!
Posted 2/14/2016 7:01 PM (GMT 0)
My son is 6"1 and currently weighs 142 pounds. He has always been thin (dx in July 2015 - after two years of diarrhea he told know one about) but initially lost weight - 10 - 15 pounds (not good) when he first started remicade in September 2015. Since then he has slowly but steadily gained some weight. His GI doctor told him he should gain weight because a). He no longer is losing nutrition through diarrhea b) He has an appetite and CAN eat since before diagnosis he would simply not eat so he would have less diarrhea. The only time he loses weight now is when he has C - Diff which has been recurring. Then he loses at least a pound or two a day! I am thrilled every time his weight increases!

_________________
19 year old son, Dx Crohns July 2015
Remicade
Pentasa
Iron
Probiotics
Azathiorpine
Vitamin B12
Vancomycin - currently on 7 week regimen
Posted 2/15/2016 1:01 AM (GMT 0)
 When I was on prednisone, I ate better so I was able to maintain a normal weight over the years.    After several years, I weaned off pred and lost a gradual 5 lbs.  When I was put on Azathioprine to control a flare, I went down to aprox 70 lbs over the course of a month, my scale doesn't show anything lower.   My doctor discontinued it, but wasn't very happy with me.    He wanted me to continue the drug.  I was scared I would lose more weight, so I wanted off.  Since then I have been having one heck of a time trying to regain that lost weight.  With much work and effort I have regained half of what I lost,  the other half fluctuates with how I am feeling at the time.  I would love to put back my normal weight and a few to spare,  but I'm scared to stand on the scale incase it discourages me.
Posted 2/18/2016 4:52 AM (GMT 0)
Dorri - Has your doctor ever suggested TPN? How does your blood work look? I'm just a little worried/curious, because my doctors insisted on TPN for me when my weight dropped to 110 pounds and my Albumin dropped to unhealthy levels. I know how eating can almost seem impossible at times when you are in pain or nauseous, so that's where IV nutrition helped a ton. And I totally noticed how much better and clear-headed I felt with the proper calories and I think it even increased my appetite a little.
Posted 2/21/2016 2:35 AM (GMT 0)
After being on Humira for one year, I had gained about 15 lbs - probably because my appetite increased. Now that I've been off of it for 5 months, I've lost about 10 lbs. It's a good thing I have 4 different sizes of clothes that I just hang on to for this very reason.
Posted 2/22/2016 9:22 PM (GMT 0)
Hi,  no Myrne, never had TPN and it was never suggested to me over the years, even being at the very low weight that I am? That may be because most of my blood work still showed in the low norm, outside of being border line anemic and a few dips in other places?    The doctor would tell me that it would go up once I was feeling better and it usually does.

Oldcrohnie, I get you about the clothes, I too have different sizes for every year.  However, I did have some older clothes hoping I would have gained enough weight to fit into them again?  Never happened, time to donate them before they become outdated.  Besides if I ever do gain weight, it will be fun to go and buy some new ones. 

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