Crohn's Disease Forum » General IBD Discussion » Humira question- going to start it but afraid of side effects

12-01-2017, 10:06 AM   #1
Join Date: Nov 2017
Humira question- going to start it but afraid of side effects

Hello. I have been diagnosed with Crohns. Have had a rough year. In August I got Giardia from contaminated food at a restaurant. I suffered with that for 6 weeks until I was properly diagnosed. I ended up in the hospitals after a round of antibiotic. I have always had problems with meds and allergic reactions. Anyway, symptoms remained but now the 10-30 times of water for stool was from Crohns. Started with prednisone and lialda but still having symptoms. Itís not as bad. Only have 3-5 trips to my favorite room in the house and itís not always water. However, my doctor wants to start me on Humira.
Can you share your experience with Humira please? I feel that if I give my body time maybe it could heal some on its own with just lialda, along with dietary changes recommended by my acupuncturist.

Thank you
12-01-2017, 10:48 AM   #2
my little penguin
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Join Date: Apr 2012

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Ds was startedon humira at 9
He stayed in it for over 5 years
No issues
Kept his Crohns good
Has to stop for surgery (non Crohns related )
The med stopped working when he restarted it a few months later

He had way more side effects from 6-mp
Good luck
DS - -Crohn's -Stelara -mtx
12-01-2017, 11:21 AM   #3
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Location: San Diego

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Lialda is among the weakest of medicines used to treat IBD. And there is research showing that while it works moderately well for UC, for Crohn's it's no better than placebo.

Unfortunately, serious diseases such as Crohn's usually need strong medicine. I just finally went on a biologic myself this week. By far the biggest risk that Crohn's patients face is not damage to their health from side effects of biologics like Humira, it is damage to their health from uncontrolled Crohn's.
12-01-2017, 12:27 PM   #4
Join Date: Nov 2017
Location: Cleveland heights, Ohio
My doctor recommended Humira about 1 year ago. I, like you, was resistant due to my great of the side effects. My doctor accommodated me while I tried "low dose naltrexone" for 6 months. When my digestive system backed up one day, I knew the naltrexone wasn't working for me. On the Humira, I'm doing great. I do support you on your quest to avoid the side effects. I'm attempting to track my calprotectin levels closely so that I can take only the Humira that I need. That's how I'm addressing my side effect fears at this point.

12-01-2017, 02:26 PM   #5
my little penguin
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One thing to remember is risk vs benefit
Everyday you take risks
Docs just are putting them on paper for you to read

I have a kid with Crohns so I only know those numbers
I am sure adults are higher
Things that have risks of death for kids

Car risk 1 in 250
Drowning 1 in 1000

T cell lymphoma without Crohns or drugs 2 in 10000

T cell lymphoma with Crohns and two drugs (biologics plus imuran/6-mp-needs that combo )
6 in 10000

Tylenol is given the infants can cause liver failure , Steven Johnson syndrome , death
Antibotics (amoxicillin again given to infants ) can cause the same

So please look up your risks you take without thought
To improve quality of life it may help
12-01-2017, 05:34 PM   #6
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Location: vienna, Virginia

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Lialda only hits the surface. You probably need something stronger
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
12-01-2017, 11:24 PM   #7
Join Date: Nov 2017
Thank you everyone for your responses! It really helped!!
12-05-2017, 05:22 PM   #8
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I've been on Humira for three years and it has been a lifesaver for me. I've had absolutely no side effects and feel the best that I have in years and years. So grateful for Humira.
12-14-2017, 05:24 PM   #9
Join Date: Dec 2017
Location: fairbury, Nebraska
I went on humira in march. Just had a scope that showed great improvement in colon! Had two months of side effects - fevers, cough, apathy, tearfulness, and exhaustion. My body has now mostly seemed to adjust. Immune system is down so I do have a few more minor illnesses (upper resp. Inf and the like) but the rest have gotten better.

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