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Remicade and Loss of Appetite

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Posted 10/10/2012 12:57 PM (GMT 0)
After coming home from vacation on August 11th, I ended up in the hospital on August 17th for 8 days with a bowel obstruction.  The GI and I had previously discussed Remicade so needless to say while in the hospital I received my first Remi infusion.  After about 4 days with and NG tube and the infusion done, things started moving.  I was glad for this because GI and surgeon were already talking resection.  I have a stricture at the terminal ileum and cecum valve.  Praying that the Remi continues to work.

I received 2nd infusion and things went well, felt good, no reactions, etc

I received the 3rd infusion on Sept 27th, and I have noticed that I have absolutely no appetite.  Is this normal? Has anyone else experienced this?  I eat because I know I have to, but I really do not want anything to eat. 

Should I notified the GI?  Scheduled for next infusion on Nov 21.  Scheduled for MRI on Oct 26th ( to see if stricture has opened or if there is hardening within the stricture )

 

Posted 10/10/2012 7:10 PM (GMT 0)
I have not heard of this as a side effect. Are you having any other symptoms like pain or nausea? Sorry I can't be of any help.
Posted 10/11/2012 3:15 AM (GMT 0)
Hi TOTM, I've been on Remicade now since February. I have it every 8 weeks. Had my 6th one 2 weeks ago. I find that my appitate doesnt decrease. Surely increases for me. I find later that day of the infusion or the next morning.. I do get some discomfort.. not sure if its from my body reacting to it but I always do and after another day or so I feel okay.  Hope things look up,  cheers.
Posted 10/11/2012 4:13 AM (GMT 0)
Hey, Top! I had Remicade as treatment at the beginning of the year. We stopped after the second because I needed two operations, and my doctors wanted me to have an immune system while healing. And after the operation, I wanted to try Mesalamine, but now it's not working, so I'm going back on Remicade.

While I was on the Remicade, I had hair loss, appetite loss, brittle finger nails, nausea, and lack of energy. It has a lot of the same symptoms as Chemotherapy. I'm hoping the hair loss won't be as bad this time. Good luck to you.
Posted 10/11/2012 2:55 PM (GMT 0)
Thanks everyone for the comments. 

To Cole90 - I also get some discomfort a few days after the infusion, but feel ok soon afterwards.  Good luck to you as well.

To Mywowgirl - I have experienced the same thing with the hair loss, although mine began when taking Pentesa.  I found a vitamin called Nioxin Recharging complex that is amazing.  You can purchase it at hair salons,  my hair had gotten so thin you could see my scalp, but now people ask me all the time what did I do to my hair.  It has thickened up and grows like crazy, so does my fingernails.

Hope you do better on the Remi this time around

Posted 10/11/2012 4:59 PM (GMT 0)
Thanks, Top, for the well wish from you. I'll look for the item you talked about. Is it a supplement, or a stay in conditioner type of product? confused
Posted 10/11/2012 5:52 PM (GMT 0)
Mywowgirl - it is a supplement.

 

Posted 10/11/2012 6:23 PM (GMT 0)
Mywowgirl and Top of the Mountain - I don't believe Remicade should be causing those symptoms. Unless it is lowering your immune system so much that deficiencies are causeing this. I agree with going on a supplement. Maybe get blood work done to see if you are deficient in certain vitamins.
Posted 12/30/2012 12:15 AM (GMT 0)
Top of the Mountain
I have a stricture in the Ileum and valve, they want me to do surgery as they don't believe that Remicade or Humeria will give me relief for very long. I am wondering how things have turned out for you? I am scheduled for surgery in two weeks time bu am thinking I dont want it! Naturally , I suppose. Docs said better to remove stricture when it is small before I have another block and then "save" Remicade type drugs in my back pocket for later? Thoughts anyone? Taking the drugs seems easier but...if I end up with surgery anyways in a year?? Hmmm...?? cry
Posted 12/30/2012 12:18 AM (GMT 0)
Sorry, I forgot to say that I have NO appetite either! I have lost 15 lbs in two months....which puts me at 108...only ten pounds more than my 12 year old! Yikes! I got so bad that I had nausea and dry heaves trying to eat and drink anything, so...please promise me to get the loss of appetite thing checked out before I did!!
Posted 1/4/2013 9:14 PM (GMT 0)
Nicoleyear1
I honestly think I would try the Remicade before having the surgery. It has really worked for me. Even in the hospital my GI said the surgery was the last resort if everything else failed. Although they did say that if the stricture had not be in the cecum valve that strictureplasty was a good option, but when the stricture goes into the cecum valve that it was not an option.
The loss of appetite has gotten better since the last infusion, I think my body just had to adjust.
Hope all works out for you.
Posted 1/4/2013 10:18 PM (GMT 0)
I am panicing as I am moved up on the surgery schedule now to next week. I have been unable to talk to many Dr, including surgeon, as they are all away! I was told that I should save Remicade then there is more disease throughout my system and have the surgery while it is a small and controlled amount? They feel it is most likely scar tissue? Did your stricture go away with Remicade?
Posted 1/7/2013 6:46 PM (GMT 0)

Strictures don't just go away, although mine has opened up somewhat and I am able to have bowel movements when I was not able to before. I still think surgery should be your last resort -- just my opinion. 

I would try to talk to my docs before considering the surgery.  I truly hope all goes well for you.  Keep us posted.

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