humira? Advice please

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karliebug
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 2/21/2009 6:16 AM (GMT -7)   
My daughter is 18 and has been treated for about 6 years for UC. Her latest colonoscopy/endoscopy showed graunuloma so now her gi doc. thinks she may have crohn's after all. We were just about to go to a surgeon to have her colon removed and now this finding has us stopped in our tracks. He thinks we should try humira. She previously tried remicade but did not have good results. He is now sending her to a specialist at Univ. of PA in Philadelphia for a second opinion. Has anyone tried Humira?

chico41
Regular Member


Date Joined Jan 2006
Total Posts : 135
   Posted 2/21/2009 8:49 AM (GMT -7)   
My opinion.  Try  Remicade or humira before the surgery.  I wish i would have.  i was diagnosed with u.c. in 1995.  in 2002 i had my colon removed due to full of ulcers, had a bag for 3 months, after the healilng proccess they then attached a J-pouch.  at the time i did not have any other options, so i thought.  really wish i would have known about this site back then.  then they told me in 03 I had chrohns.  tried all the drugs available then in 05 they put me on remicade.  
then February of 09 i was rushed to the hospital due to stricture where they made the J-pouch.  i also built antibodies to remicade.  so no i am taking Humira, which  i was nervous about giving my self shots.  had my first dose 1 week ago.  Was not as bad as i assumed.  with prednisone,and 2 antibiotics.  going to keep taking the antibiotics for 3 months until the humuria kicks in.  Hope it works.  Tapering off on the prednisone though.  god i love that drug, yes i know it is bad, butttt.   the prednisone makes me feel really wired and hungry all the time.   i could use the extra weight.  during the remicade they say most ppl put on weight, but now me.  darn it.   what is sad about not having any colon is, you really have to watch your diet, loose stools, lack of control, you have to drink lots of water because of the loose stools.   So what i am trying to say here is My Opinion, check out all options before surgery.  we are all different. good luck to your daughter. 

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 2/21/2009 8:49 AM (GMT -7)   
I've been on humira since September of 2008. I haven't had any side effects other than occasional(quite severe) head aches. I also had to have a urinalysis done recently and it came back positive for a bacterial infection so I'm not sure if it is at all linked with the humira, but it was treated over the course of three days with antibiotics and I am fine now anyway.
I do feel a lot better with humira though. I have to be extremely careful with diet, stress, and overexertion, but I think it would be that way regardless of medication.
Best of luck in your daughter's decision...I know it's not an easy one.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 5 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


sweetntart715
New Member


Date Joined Feb 2006
Total Posts : 10
   Posted 2/21/2009 10:27 PM (GMT -7)   
I have been on Humira since Aug 2008 and have had pretty good results for my UC and joint symptoms. I have not experienced any major side effects. The injections are not bad, but tend to sting quite a bit when going in. It would definitely be worth a shot to try it.
____________________________________
Pancolitis - Diagnosed 12/05
Fibromyalgia
Interstitial Cystitis
Spondylitis
 
Medications: Humira, Methotrexate, Lialda, Levsin, Elmiron, Detrol LA, Multivitamin, Folic Acid


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 2/21/2009 10:48 PM (GMT -7)   
I've been on Humira since July of last summer. Once it kicked in (over a month later), my abdominal pain went away and my iron levels finally went up for the first time in many years. The only side effect I have is a small itchy red welt at the injection site. It usually goes away in a day or two. If it weren't for my fatigue, I would consider myself in remission.

When you give the shot, warm the pen up by holding it in your hand for 15 minutes or so. If the medicine is straight from the fridge, the injection really really hurts, and the itchy welt can get quite large and last a long time. A warmed up injection still hurts, but it's tolerable and over fast. The welt will also be smaller and go away fast.

karliebug
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 2/28/2009 11:37 AM (GMT -7)   
well we are going to Phila. on March 27th to speak with a GI that specializes in Imflamatory bowel diseases. I was hoping to get her in sooner. We'll have to see what his opinion is and I am hoping she doesn't start going downhill between now and then. I can't believe we had to wait a month for an appt. Her other dr. thought humira was worth a shot, but University of Penn also sometimes has clinical trials. I just don't know if I want her becoming a guinea pig after all she's been through.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/28/2009 12:26 PM (GMT -7)   
I would try the Humira if that's what her doctor suggested. It certainly seems like a reasonable step. I am trying Humira as well to avoid surgery.

I would try all other options before opting for trials.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 2/28/2009 10:02 PM (GMT -7)   
karliebug said...
well we are going to Phila. on March 27th to speak with a GI that specializes in Imflamatory bowel diseases. I was hoping to get her in sooner. We'll have to see what his opinion is and I am hoping she doesn't start going downhill between now and then. I can't believe we had to wait a month for an appt. Her other dr. thought humira was worth a shot, but University of Penn also sometimes has clinical trials. I just don't know if I want her becoming a guinea pig after all she's been through.


I began trying to get into a new GI at the beginning of August, 2008. I finally saw her for the first time last week, and won't be able to have a colonoscopy until the end of May. So it could be worse turn.

karliebug
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 3/1/2009 6:52 AM (GMT -7)   
Well, she just had a colonoscopy/endoscopy on Feb. 13 so she shouldn't have to have another one. I'm thinking that he'll definitely want blood work and maybe some other tests that hopefully aren't too invasive. We really need to know it is chron's or colitis. Maybe he'll recommend the humira too.
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