Crohn's Disease Forum » General IBD Discussion » Just got my first humira and TERRIFIED!!!

05-23-2017, 05:16 PM   #1
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Just got my first humira and TERRIFIED!!!

So I've been avoiding getting humira for weeks. I don't really have major symptoms- occasional stomach pain in right side. After my colonoscopy dr said their is inflammation and the calprotectin test came back 319. I have been doing research and kept asking if I can try acupuncture or other ways beidre putting this chemical in my body starting at a young age - I'm 30- and a mom of two kids. He said he really thinks I should start the humira to avoid progression. I just got it delivered and started reading the sheets. Everyone I hear how it raises my chances for cancer and to watch out for the symptoms, gives me SO much anxiety and just want to throw up. Please someone tell me it will be ok.. Totally freaking out!
05-23-2017, 05:33 PM   #2
my little penguin
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You have kids
So read the info packet on Tylenol which is given to infants
It can cause Steven Johnson syndrome liver failure and death
But the benefits outweigh the risks

Ds started remicade at age 8
And humira at age 9
That was over 5 years ago

Cancer risk is there with any inflammatory disorder unfortunately
Especially when left under treated
Immunosuppressants cause a higher risk of lymphoma when used by themselves especially imuran or 6-mp

Humira has given Ds clean scopes and nornal fecal cal

Just because the symptoms are minimal doesn't mean damage isn't happening on the inside

Good luck with the humira !!
DS - -Crohn's -Stelara -mtx
05-23-2017, 06:06 PM   #3
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He said he really thinks I should start the humira to avoid progression.
He's right.

There are definite risks associated with Humira or any other medicine for that matter, but the risks are small and manageable.

The biggest risk BY FAR that Crohn's patients face is all the lasting damage that uncontrolled Crohn's will do to your body. The risks from side effects of drugs are tiny by comparison.
05-23-2017, 06:39 PM   #4
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Thanks so much for replying! You have made me feel better! Every time I read this posts it makes me feel better and then I read something and freak out again!
05-23-2017, 08:26 PM   #5
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I've had to make a lot of decisions that I had to out way the benefits over the risks. Although, with Humira, I didn't think twice. I was in a bad spot. I needed a solution. Just be cautious around people that are sick. And don't let that scare you. I think the doctor would put you on that medication if he or she didn't believe you could benefit from it.

05-24-2017, 10:46 AM   #6
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Give it a try, if the treatment provides an improvement, chances are the risk of cancer by the drug will offset the risk of cancer that comes with scaring of the intestines from the Crohn's being untreated.
Have you tried alternative medicine and diet first? When those don't work then its worth giving the treatments a try.
05-24-2017, 06:40 PM   #7
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I totally understand!! I've been feeling so much better for the past two weeks and asked my GI today if I really needed to start Remicade infusions. She was very blunt and said "if you don't, you will lose your colon". Yikes!!! Sign me up now!

She then showed me that my latest calpotectin test came back as 1234 because it was too high to be measured.

My doctor is very compassionate and explains everything very clearly to me. Her bluntness was a bit of a wake up call for me. I really appreciate that she wasn't wishy-washy like some doctors can be.
05-25-2017, 08:14 AM   #8
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I resisted going on Remicade for a year because I was so terrified. Then I got six fistulas and there was no other options. Remicade worked for me for three years, until I got bad side effects. This horrible disease progresses, sometimes very quickly, and doctors now want to nip it in the bud before it gets worse.
05-26-2017, 03:37 PM   #9
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chances of cancer are likely same or worse without treatment. they have studied this search for it.
Learn How Fecal transplants restore good bacteria that regulate inflammation to induce remission and how it has potential to be a cure for IBD in the future. Follow the link below.
05-26-2017, 04:01 PM   #10
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I started remicade in 2009, my crohns was very mild at the time. However it gave me several really good years where my disease didn't progress. It actually didn't really become severe until I got cdiff after I had my kiddo. Some drs like to start with the biologics to keep the bowel from being damaged. Less scar tissue, less stricturing. It's all a good thing.
Diagnosed Terminal Ileum Crohns 2008
Remicade 6yrs
Had a healthy baby boy 2014
Switched to Cimzia but didn't work 2015
Back to Remicade and added Azathioprine 2016
05-27-2017, 09:04 PM   #11
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Thanks for the reassurances. JaimeM, it was a bout with c.Diff that landed me in the hospital with dehydration and led to the Crohn's diagnosis.

There is so much to learn!

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