Crohn's Disease Forum » Your Story » Silent Crohnís and Humira


02-06-2019, 03:41 PM   #1
Crommy
 
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Silent Crohnís and Humira

New member so go easy on me. 😉
Iím an otherwise healthy 58 year-old male who has lived with silent Crohnís for several years, no life-altering symptoms. Iíve had a couple semi-successful camera endoscopies, that did show some inflammation and scarring in the small intestine. A biopsy has never been done. My GE, who has tried nothing more than Pentasa on me, now wants me on Humira. All blood tests are currently normal, including CRP, and a FCP sample was normal.
I am super hesitant to jump into taking this drug, especially since I have tried no life-style modifications and quite frankly I quit the Pentasa as taking 8 pills a day became a job. Humiraís list of possible side-effects is mind blowing. Plus, my GE says once I start taking it I canít come off it, ever.
I feel a bit pinned in on this. I could sure use some advice.
Thank you
02-06-2019, 06:26 PM   #2
Jo-mom
 
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Hello, you seem to be in the minority. It sounds like your doctor wants to prevent surgery in the future because although you are pretty well asymptomatic, you still have strictures and inflammation. Sorry I don't have much to offer. My son was pretty asymptomatic until more recently but the difference between him and you is that he had lots of inflammation and also some narrowing happening, but sadly he also has arthritis from crohns. He was put on remicade. You don't seem to have high levels of inflammation but if you still have a stricture, I suspect your doctor is trying to prevent surgery for you in the future. You might want to have a conversation with your doctor and gather more details as to why this is the route he wants you to take.


Also, do you know if you have mild, moderate, moderate to severe crohns? Normally, biologics is recommended for moderate to severe crohns (with our without symptoms).
02-06-2019, 06:45 PM   #3
awoenker12
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I am super hesitant to jump into taking this drug, especially since I have tried no life-style modifications and quite frankly I quit the Pentasa as taking 8 pills a day became a job.
You should never stop your medication unless approval by you doctor. I did the same thing. I was on pentasa, 4 pills a day and I stopped taking it because I didn't have any symptoms. That was the biggest mistake I made, because I ended up flaring and now I am on Remicade, another biologic. Thankfully, I am in remission again.

Don't be worried about the side effects of Humira. The odds of getting some of the side effects are extremely small. The benefits of the Humira would outweigh the side effects by far.
02-06-2019, 07:43 PM   #4
Crommy
 
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Also, do you know if you have mild, moderate, moderate to severe crohns? Normally, biologics is recommended for moderate to severe crohns (with our without symptoms).
Thank you for responding and I appreciated your insight. Iím sorry to hear about your sonís complications.
He has me at moderate.
02-06-2019, 07:48 PM   #5
Crommy
 
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Don't be worried about the side effects of Humira. The odds of getting some of the side effects are extremely small. The benefits of the Humira would outweigh the side effects by far.
Yea, Iíve been in denial and the lack of symptoms has made it easier to maintain that position. Time to wake up.
Very good news you are in remission. So how do they measure Humira success when there are no symptoms to measure improvement on?
Thank you for your reply and thoughts on side effects.
02-06-2019, 08:37 PM   #6
my little penguin
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Welcome
Itís tough when A your an adult AND B you read those pesky side effects list

Ds was dx at age 7 and is currently 15
He was in humira for over 5-6 years till it stopped working
And now is on Stelara for the past year and half

Side effects list of any drug is scary
Infant Tylenol can cause
Liver failure ,Steven Johnson syndrome and death
Yep but given to babies all the time
Since the benefits outweigh the potential risks (side effects )


Having uncontrolled inflammation puts one at risk for surgery cancer and death

I know kids which is how I sleep
Everyday risks we take
Risk of death for kids under 14 in US
By car 1 in 250
By drowning (even if they can swim) 1 in 1000
But he takes car rides and swims in the pool for quality of life

Risk of FATAL TCELL LYMPHOMA when both biologic AND immunosuppressants are taken together 6 in 10000

Average joes on the streets risk who does NOT have ibd 2 in 10000

So risk vs benefit

I can say for my kiddo
Started remicade at 8
Humira at 9
Stelara at 13
His intestine is healthy looks ďnormal ď ďpristine ď
No extra anything
Far less colds than my non ibd kiddo

Itís also helps his arthritis (dx at age 10)

Itís tough but controlled inflammation is always a good thing
__________________
DS - -Crohn's -Stelara -mtx

Last edited by my little penguin; 02-07-2019 at 06:41 AM.
02-06-2019, 08:39 PM   #7
my little penguin
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Forgot they measure success by follow up colonoscopy- that look nice pink and healthy for intestines
02-06-2019, 08:43 PM   #8
Jo-mom
 
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My Little Penguin - thank you for those stats - that is very helpful information.
02-06-2019, 10:03 PM   #9
awoenker12
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Yes, a colonoscopy is a great way to tell if there is ongoing inflammation inside the intestines.

Sometimes a person may feel ok, but there is ongoing inflammation in their intestines in which they would need to switch to a different medication.

Also, blood work is another good way to check for signs of inflammation.

Also, some doctors approach to medication is different. Some prefer the bottom up therapy by starting with lighter meds such as pentasa, and eventually work your way up if there is disease progression.

The other approach is the top down therapy. This is where you start with biologics in order to prevent future complications from the disease.
02-07-2019, 02:29 PM   #10
Cable
 
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Hi Crommy,

I think I may be where youíre at, kind of. There are multille patchy ulcerations in my proximal jejunum, no strictures and no granuloma however. Also some Ileitis. I havenít technically received a formal Crohnís diagnosis as all biopsies and bloodwork have been normal. Question, was any blood work you did ever abnormal?

Last edited by Cable; 02-07-2019 at 02:48 PM.
02-07-2019, 03:28 PM   #11
Crommy
 
Join Date: Feb 2019
Hey Cable,

My blood work has all been normal. The entire diagnosis has been based on visual evidence found during camera endoscopies and colonoscopies. During this whole process I've been consulting with my GP for 2nd opinions, who checks with his in-network GE doc who is lock step with my GE. So I start Humira next week.
02-07-2019, 03:41 PM   #12
Cable
 
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Wow, do they think you have a pretty aggressive case in spite of normal blood work? I know some docs prefer a top down plan.

My doctor currently has me on no treatment with a follow up in 6 months. I watched a pretty interesting presentation on mild crohnís here: https://youtu.be/PEP7SmmPnqY in case yourninterested where they talk about different treatment options.

Hope all goes smoothly for you.
02-07-2019, 08:22 PM   #13
my little penguin
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Cable you can have crohns and still have normal bloodwork
Everyone is different
Ds has normal bloodwork but crohns for 8 years now
02-07-2019, 09:11 PM   #14
Cable
 
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Cable you can have crohns and still have normal bloodwork
Everyone is different
Ds has normal bloodwork but crohns for 8 years now
Thanks my little penguin,

Thatís what my doctor said too. This is all so new to me. Iím just really scared and having a lot of anxiety about it all. My doctor wants to wait for treatment but Iím scared itíll get worse. That being said it is in accordance with the guidelines Iím just nervous.
02-12-2019, 05:47 AM   #15
SB7
 
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Iím right there with you Cable. I was just told my Crohnís is moderate. Iíve been on Pentasa for 10 years now. Blood tests Sed rate, Calprotectin, CrP all normal. Really donít want to go with the biologics because of the possible side effects. I guess it comes down to risk of possible side effects of biologics vs the risk of effects if I donít, and keep trying lifestyle changes and alternative methods. Wishing everyone well.
02-12-2019, 11:20 AM   #16
Scipio
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∑ Stelara
By far the biggest threat to health that Crohn's patients face is not the risk of side effects from medications but the risks of uncontrolled or poorly controlled Crohn's disease.

The serious side effects from biologics are real but very rare. Serious complications from poorly controlled Crohn's (fistulae, bowel blockages, surgery, etc.) are real and very common.
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