Crohn's Disease Forum » General IBD Discussion » Please give me some advice.


12-22-2017, 10:44 AM   #1
ninjarambohd
 
Join Date: Jun 2017
Please give me some advice.

Hi. Ok i have been diagnosed with crohns. The dr wants to put me on Humira. I read online about the side effects and I'm afraid of the cancer side effects. Does it always happen? Is there any other medicine safer than Humira?
12-22-2017, 12:25 PM   #2
my little penguin
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First off these are POTENTIAL side effects
It does not mean you will get them
Second having under treated Crohns is s risk factor for cancer

The numbers are any average person on the street without Crohns
Can get TCell lymphoma at a rate of 2 in 10000 people

If your taking humira plus an immunosuppressants such as 6-mp or aza together
Then the rate goes up to 6 in 10000

The rate for humira by itself is even lower


Ds has been on biologics since age 8
He is now 14
He took humira plus methotrexate for over 5 years until it stopped working
He had to stop it due to surgery (non Crohns) and when he restarted it
It didnít work so he takes Stelara now


Immunosuppressants such as 6-mp and aza have a high rate of lymphoma so most pediatric GI will not use them anymore

Most use biologics such as remicade /humira
A lot of folks here have been on them for over 10 years without any issues


Also realize you have been taking risks all your life without knowing that had much worse odds

I have a child so I know theses

Risk of death for a kid in the US under 14

By car 1 in 250
Drowning 1 in 1000 (even if they know how to swim)

Risk of liver failure /Steven Johnson Syndrome or death
From something simple like Tylenol/amoxicillin
Is there as well
But both are given to infants

In this case your GI feels the BENEFITs of Humira
Far out weigh the risks

Itís a lot to take in
I cried for weeks when Ds was dx
Bound and determined not to take any meds
Then I read and learned
And his gut looks so much better after he started biologics
Most would say itís normal now versus before

Good luck and remember to breathe
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DS - -Crohn's -Stelara -mtx
12-22-2017, 12:26 PM   #3
my little penguin
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Going to tag other parents of kids who all are on biologics and have been for years without issues
Jmrogers
Mehita
Farmwife
Pilgrim
Crohnsinct
Maya142
Tesscom
12-22-2017, 01:07 PM   #4
ninjarambohd
 
Join Date: Jun 2017
Thank you very much. I highly appreciate it. I'm 17 so I'm really worried. So the risk is low? Should I not worry? I read about Entivyo is that better or will I go ahead with Humira?
12-22-2017, 01:11 PM   #5
ninjarambohd
 
Join Date: Jun 2017
Btw another thing I don't understand is why I have no symptoms of crohns? Yes I had a fistula and abscess which I had a resection for about 3 days ago. The dr says that I have tiny bit of inflammation in the colon but I have no symptoms such as bloody diarrhea pain joint pain ulcers eye inflammation etc...... How is this possible?
12-22-2017, 02:14 PM   #6
Maya142
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There are some people who just don't have symptoms. It's very variable. My daughter was diagnosed at 16 and her only symptoms were mild constipation and abdominal pain. And weight loss. NO diarrhea or bleeding. Some kids present with only weight or growth issues and NO gut issues at all. Some kids are completely asymptomatic - no symptoms at all.

The goal with IBD is to control inflammation to prevent complications like fistulae, abscesses, strictures. To prevent surgeries. You need your small bowel to live, so you definitely don't want to have multiple resections if you can help it.

All drugs with side effects but you have to look at risks vs. benefits. Serious side effects with biologics like Humira are very rare but serious complications due to untreated inflammation because of Crohn's are not.

As a parent, I worried a lot before I put both my girls on biologics. I spent many sleepless nights agonizing about whether it was the right choices. But at some point the disease becomes scarier than the medications. Both my girls have been on biologics for 8-9 years with NO side effects at all. They have been life-changing medications for my daughters.

Good luck with your decision.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-22-2017, 02:30 PM   #7
ninjarambohd
 
Join Date: Jun 2017
Thank you very much. So just to ask one more time what is the overall risk if getting those side effects with Humira?
12-22-2017, 02:33 PM   #8
Maya142
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So I believe for an average person, with no Crohn's, the risk of lymphoma is 2 in 10,000. If you are on a biologic, it is 4 in 10,000. So very, very low.

If you are a biologic and immunosuppressant it is 6 in 10,000. Still very low.

This is a great presentation about the risks and benefits:
http://programs.rmei.com/CCFA139VL/

Also remember that inflammation itself increases your risk for cancer - colon cancer for example. So treating inflammation is VERY important.
12-22-2017, 02:39 PM   #9
crohnsinct
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Hey there. Sorry about the diagnosis but glad you are under the care of a doc and on your way.

One of my daughters has dramatic symptoms, the other very few and none of the usual ones. She just gets a little abdo pain here and there and has some joint pain. We were shocked when she was diagnosed. We were even more shocked when it turned out she needed a biologic to control such mild disease.

If you had a fistula your disease is not mild and it needs to be treated. I think MLP laid out the risks pretty clearly. I just wanted to add that the risk profile of Humira or Remicade are actually a lot better than if you stepped down and used just an immunosuppressant like Imuran or Methotrexate.

O has been on Remicade for 6 years and no scary side effects. She loves Remicade. We actually did not know she had the disease for two years. It was so quiet. Then in just two weeks her insides were torn to pieces and she landed in the ICU. Remicade has given her back her life.

Thas always had pretty mild disease but lower level drugs didn't touch it. has been on Remicade 2 years now and she also loves it.

Believe me, as a teen your chances of dying in a car accident are infinitely higher.

Good Luck!
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-22-2017, 03:03 PM   #10
ninjarambohd
 
Join Date: Jun 2017
Thank you everyone. I highly appreciate it. To be honest I read this news article and it creeped me out a lot. https://m.huffpost.com/us/entry/1071823

Also on humira website it has it as a side effect as well which creeped me out even more.
12-22-2017, 03:06 PM   #11
ninjarambohd
 
Join Date: Jun 2017
Oh one last thing I don't understand is what is the difference between biologic and immunsupessent? The doctor told me she will put me on Humira only?
12-22-2017, 03:34 PM   #12
my little penguin
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Immunosuppressants are lower level drugs
Not as effective
Humira is more effective for Crohns
Than entivyio
Our child GI will not use entivyio fir Crohns kids
They only use it for ulcerative colitis

I understand itís scary
But biologics do let you intestine heal
And that is a very good thing
12-22-2017, 03:44 PM   #13
crohnsinct
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O.K. well you have learned your first lesson when dealing with a chronic illness. The Huffington is not a credible scientific journal. I only scanned it but that article was inflammatory and not very responsible and I dare say an opinion piece.

As for the differences, MLP is our resident scientific expert but I will take a stab at boiling it down. I think the difference is that the immunosuppressants suppress the entire immune system where the biologics suppress the manufacture of a specific part of the immune system "TNF", that has shown a link specifically to IBD.

Neither of my daughters have gotten sick more often because of being on a biologic or immunosuppressant. As a matter of fact they have both been on youth mission trips with kids who got mono and my girls were fine. Cousins had flu and vomited in their bed and my girls were fine. My Crohnies are actually the healthiest people in our family.

If you do get sick it may take you a little longer than usual to get over the illness.

I think the article said biologics cause fungal infections and TB etc. It does not cause them but anytime you suppress the immune system you are going to be at higher risk of those things. You should be tested for TB prior to starting a biologic as if you already have TB exposure (even latent) adding a biologic on top of that could be serious. They will usually treat the TB and wait for you to be all clear and then start the biologic.
12-22-2017, 06:26 PM   #14
ronroush7
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As for your question about no sign of the disease maybe the surgery helped with that.
__________________
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.
12-22-2017, 06:41 PM   #15
ninjarambohd
 
Join Date: Jun 2017
Thank you everyone for your kind reply. I feel much better now. I highly appreciate it.
01-09-2018, 10:57 AM   #16
Jmrogers4
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So sorry I just saw my tag, was enjoying time with my son who was home from college. He is 18 and has been on remicade for 4 years with no issues and we are just hoping that he is able to continue on for many more years as it's really allowing him to enjoy a normal time. I was reluctant for a long time to start a biologic but he definitely has a better quality of life and that is really the way we look at it anything could happen at any time so enjoy.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-09-2018, 11:32 AM   #17
McKinley
 
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My goodness that article was trash.... for one thing listen to doctors and not journalists who want to create "hype news". If you are unsure about a medication never ever google it itll only get you worked up either go to another doctor or even better sit down with your current doctor and have a serious discussion about wether or not the risks out way the benefits in the long run. Cause articles like that are not educational or even medical they are just there to sell at space and point the blame at someone.
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