Humira not working

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Kandice
New Member


Date Joined Aug 2007
Total Posts : 9
   Posted 4/1/2008 7:40 AM (GMT -7)   
Hello. My brother has been on humira for 5 months now. He is down to weighting only 154 lbs. Which is about 40 lbs shy of where he should be. He cant eat at all without throwing up. Does anyone have any suggestions?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/1/2008 8:59 AM (GMT -7)   
Do you know if he has any narrowing or strictures?  Could be the cause of his nausea.

Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Kandice
New Member


Date Joined Aug 2007
Total Posts : 9
   Posted 4/1/2008 9:18 AM (GMT -7)   
I am unsure. He was put in the hospital on friday night because he was running a fever of 103.7 but they decided that on saturday that it was due to dehydration. So saturday he was released. I am not sure if he is getting sick due to the fact that he is consuming too much food at one time or what. He does have an appointment on wednesday but I was just wondering what course of action other people are taking and what foods people are eating that might be helpful.

Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 4/1/2008 1:53 PM (GMT -7)   
Kandice,
 
Does all food make him vomit? Or just specific things?  If he is particularly weak right now, that might be why he isn't able to hold food down.  If you want to find out about foods that might be more agreeable for your brother check out the Specific Carbohydrate Diet. It might be an option for him.  I know it is so frustrating when you feel so sick and you want to eat, but you can't. This link will give you more info.
 
A few years ago I was so sick, in and out of the hospital all the time and someone on this site told me about SCD, so I tried it because I had nothing to lose and it really helped me a lot. Maybe it could help your brother.  I hope he feels better soon!

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 4/1/2008 6:56 PM (GMT -7)   
Ive been on HUMIRA for almost 8 months with no benefits from it as well. Seems like your brother and I are in the same boat I went to 152lb last month and was put back on prednisone (the only thing that helps). I have an appointment tomorrow, wednesday at the cleveland clinic to see where to go next.
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 180lbs). On HUMIRA it's not working, Prednisone

============================================


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 4/2/2008 5:05 AM (GMT -7)   

Kandice,

Your brother could try total enteral nutrition (also called elemental, semi-elemental, or polymeric diets), meaning the use of a special liquid diet instead of regular food. It's an old treatment for Crohn's disease that has been shown to work in clinical trials but isn't much used in the US these days (doctors think it's too difficult to ask patients to give up their normal diet for a few weeks). However, it can be very effective, especially for people with Crohn's disease in the small intestine who have severe weight loss. It might be worth talking with his doctor about this. You can drink the formula by mouth, but given your brother's problem with vomiting, it might be better to bypass the stomach and use a nasojejeunal tube (feeding tube going directly to the small intestine).

Good luck.


Kandice
New Member


Date Joined Aug 2007
Total Posts : 9
   Posted 4/2/2008 6:57 AM (GMT -7)   
Thanks alot for all the advice. This just gets so frustrating.
TO FINAL MACGYNER~~ Has your doctors said anything to you about Remicade? Matt was on remicade for about 5-6 yrs and it was a real miracle drug. His body starting building antibodies against it last May, but that doesnt happen to everyone. This honestly is something you should talk to your doctor about. Prednisone is great but the long term affects it could have are not so great. Matt has had Crohn's for about 10 yrs now.
I will definately check into that Diet too!!

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 4/2/2008 9:42 AM (GMT -7)   
Kandice, I just got back from the doctor. Remicade was brought up but she told me that due to the fact that HUMIRA was not working she did not feel remicade would work with me because of how similar they are. Her recommendation was for me to start tysabri. So Now I begin the insurance approval process to start that.
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 180lbs). On HUMIRA it's not working, Prednisone

============================================


Kandice
New Member


Date Joined Aug 2007
Total Posts : 9
   Posted 4/2/2008 11:41 AM (GMT -7)   
I dont know about that. I think you should research that on the net and possibly get a second opinion. Honestly that drug is very new with a ton of side affects. I think they should try Remicade first. They say that Humira is like Remicade but that is Bull... My brother was in a remission for 5 yrs when he was on remicade and humira has not worked at all. Just food for thought but SERIOUSLY check into a second opinion before you try that. Please keep in touch with how things go. My brother goes to the doc today at 3:30 so I will let you know how he is. Here is my email address also so you can keep in touch. mulrooneykan@yahoo.com

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/2/2008 4:08 PM (GMT -7)   
From what I understand, and maybe what your doctor is suggesting, is that it is not uncommon for a person who does not respond to one TNF alpha blocker to not respond to the others. I lost response to Remicade, Humira never worked. My doctor said that when Cimzia does come out, it's unlikely to help me because my body seems to have stopped responding to the TNF alpha drugs.

Maybe you could ask your doc why you couldn't just try Remicade and then if it doesn't work move to Tysabri. Just wanted to let you know that my doctor said the same thing about Remicade/Humira/Cimzia... And, they all have hard side effects.
--39 year old 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
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 4/2/2008 5:21 PM (GMT -7)   
As someone who has taken quite a bit of Humira, I don't think Humira actually has "a ton" of side effects. Everyone should remember just because there are "potential side effects" listed on the literature that comes with the medicine, does not mean most people or any, taking the drug, will have the same side effects. Drug companies are required to list any and all "reported " side effects, whether a relationship to taking the drug can be established or not....

just a thought I wanted to bring up...

as for me, Remicade worked great for only a few months, Humira isn't working much more either.

anyway, I do have a question for the original poster, Kandice. When you say he "should" weight 194, where do you come up with that number? how tall is your brother? just curious.

Thanks,

Nat
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 367
   Posted 4/2/2008 7:00 PM (GMT -7)   

As to the original question (can't keep food down)--I'm sure he has tried, but just in case--has he tried the traditional chicken soup and saltines??  I know this sounds simple, but sometimes can be over looked.  I would also agree to try TNP.

As for trying a different anti-tnfs--the experts (Sandborn, Hanour, Rubin, etc) have done studies (as well as witnessed in practice) that support the idea that just because one tnf didn't work doesn't mean a different tnf wouldn't work.  If I were him, I would at least try what is available before giving up.  (Who wants to stay on steroids??  Yuck!)

I realize there are many side effects listed in the package insert for anti-tnfs, but ALL "adverse events" must be listed that occured during the clinical trials--That means that even though a person already had a pre-existing problem and that is what they had complications with (or died from), it still has to be reported.

Deciding which medication to take is a personal decision to make with your physician.  I strongly encourage you to look at the risk versus the benefits in your INDIVIDUAL case.  Just becuase it worked for one doesn't mean it will work for another.  And VICE VERSA!

Good luck getting answers and results!


Kandice
New Member


Date Joined Aug 2007
Total Posts : 9
   Posted 4/3/2008 6:00 AM (GMT -7)   
My brother is 6'2" and I came up with that number from his doctors. He is super super malnutritioned right now. He looks like a skeleton. Also he went into the ER at about 5:30am today. He is very sick. Now they think he might have a blood clot in his leg. GREAT, what else can happen to this poor kid.
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