Anyone on Cimziz having side effect of poor appetite???

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New Member

Date Joined Oct 2009
Total Posts : 2
   Posted 10/16/2009 1:37 PM (GMT -7)   
Hi all! I'm new to this forum. I have a question. I was diagnosed with Crohn's when I was 22. I'm now 33, and have tried every drug out there! I did Remicade and had a reaction (breathing problems) so I had to stop that. I had my entire colon removed in 2005, then had the Crohn's come back in my small intestine. In 2006, I had a second surgery to remove part of my small intestine. I did well for about a year, then it came back in 2 more places in my small intestine. My doctor put me on Cimzia. I have been taking the Cimzia injections for a year now and my Crohn's has stayed in remission! YAY! This is the first medication that has EVER put me in remission, so I am a big fan of Cimzia. My only problem is that the Cimzia makes me have absolutely no appetite whatsoever. Somedays I have to stop and think..."Have I eaten anything today??" I seriously never feel hungry, and have to force myself to eat. I don't feel sick, just not at all hungry. I've also noticed that the Cimzia makes me tired all the time...of course, that could be from not eating much. I'm not complaining...I can handle this side effect, as it is mild compared to the pain and constant bathroom trips from the Crohn's flare ups. The only thing that concerns me is that I continue to lose weight. I don't want to lose anymore weight, in case the Crohn's comes back. I looked like a crackhead before my surgery, and I don't like that look. tongue Just wondering if anyone else on Cimzia has had this problem??? Thanks!

Regular Member

Date Joined Jun 2006
Total Posts : 321
   Posted 10/16/2009 2:46 PM (GMT -7)   
I'm glad to hear you are in remission!!! That gives me hope :) I have been on Cimzia for a few months and I also have no appetite whatsoever. I didn't think much of it because I've always been a bit of a finicky eater and I have been flaring a little for the last few weeks. Now that you mention it though, I'm usually still hungry even if I'm scared of food or I think it's gross lol. I haven't even been hungry at all lately...sometimes I'll just eat a couple pieces of bread and a Nutrigrain bar for the day and not think anything of it.

It's funny because I've also been feeling like I look a bit like an addict lately because of all of the weight loss. I just look unhealthy. Last time I was at the doctor a few weeks ago, he said I look like I'm about ready to be hospitalized. They mentioned putting me back on Prednisone for awhile and I almost welcomed it just to enjoy food again lol.

So basically yeah, I have no appetite either and what I do eat has to be bland because everything else just grosses me out.
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann

Veteran Member

Date Joined May 2005
Total Posts : 511
   Posted 10/17/2009 8:29 AM (GMT -7)   
I just started on it a few weeks ago. I just took my second set of injections Wed. night so I'm very new on it.  lol
But yeah I did notice after this second set Wed. I haven't really been all that hungry.  I am eating but I know
a few times I told my husband "I'm not all that hungry but I should try and eat something".
I'll have to keep an eye on it. 
I am getting really bad heart burn though!!  And very moody at times.  Not sure if its from the Cimzia
but keeping an eye on it too. 
Living with Crohn's Disease since Jan./2000 
I'm a true Crohnie with IBS and Arthrities too. I have Crohn's very mild compared to a lot of Crohn's people.
Meds I have tried:  Too many to list- LOL
Meds currently on:  Tramadol for the pain
                               Cimzia Injections. Just started on 9/30/2009                      
No Surgeries

Regular Member

Date Joined Dec 2008
Total Posts : 57
   Posted 10/17/2009 9:39 AM (GMT -7)   
Hi Guys, I have been on Cimzia and 6MP together for about 5 months. Like you JK, this is the first time in over 30 years that I am not running to the bathroom 20-25 times a day. Finally I am starting to feel "human." One of the side effects is anemia and my GI has it narrowed down to the Cimzia as opposed to the 6MP. I have noticed that I eat less and and drink more. I think my tummy has shrunk. I am constantly aware of not wanting to dehydrate especially since I live in South Florida.
I will do anything to stay on this medicine because for me, the combination has been a life savior. I hope it helps the rest of you too as much as it has helped me.

Darilyn (Omigrandma)

Veteran Member

Date Joined Aug 2007
Total Posts : 884
   Posted 10/19/2009 11:13 AM (GMT -7)   
I guess I'll be the odd (wo)man out... I was on Cimzia for about a year back when it was in the Phase III stages of clinical trial and I never had any decrease in appetite.  I've been on it again for 4 weeks today and haven't noticed it this time around either. 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 10/19/2009 12:00 PM (GMT -7)   
I've been on Cimzia for about 8 months. I don't notice any change in my appetite from the med. Actually, I've put on some weight since I've started. That's a good thing for me since I was underweight before. And, while I'm not in remission, it does seem like Cimzia has helped me.
--female dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09

Aimee =)
Veteran Member

Date Joined Jun 2004
Total Posts : 1020
   Posted 10/19/2009 8:15 PM (GMT -7)   

I have only been on it a few months but (sadly) haven't noticed any appetite changes. I am easily hungry and even if I'm not, I eat out of boredom ;)

I could lose a good 30+ pounds so that'd actually be a welcome side effect for me, LOL!

New Member

Date Joined Oct 2009
Total Posts : 2
   Posted 10/23/2009 10:12 AM (GMT -7)   
So helpful to hear from all of you. It makes me feel better to know that I'm not the only one with this side effect. I'm really glad I found this site. It's nice to have somewhere to go to ask questions.

MissCris, it took a few months for the cimzia to start working for me. Hang in there. Hopefully, you will have good results from it. It has been such a blessing for me. Like I said, I can deal with not being hungry. And I've been eating lots of bread lately too. LOL! That's the only thing that sounds good.

LBJ, I've noticed that I have had heartburn a lot too lately. I have been eating tums like crazy. I never even thought that it might be from the cimzia, but that is something to think about. Could be....???

Omigrandma, I know what you mean about starting to feel "human". I had forgotten what it was like to feel ok. I am so thankful for cimzia! I have problems with anemia too, but I have always been anemic. I've actually had iron infusions through IV, they make me feel wonderful! You might ask your doctor about that.

Zena, SR and Aimee- Glad you guys are still hungry! :) And I hope that the cimzia works well for all of you!

Thanks everyone for your replies! :) :) :)
Crohn's Disease, Colon removed in 2005 (Ileostomy), Part of small intestine removed in 2006, currently taking Pentasa and Cimzia.

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