Silent Crohn’s and Humira

[Crommy]

Silent Crohn’s and Humira

New member so go easy on me.
I’m an otherwise healthy 58 year-old male who has lived with silent Crohn’s for several years, no life-altering symptoms. I’ve 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. Humira’s list of possible side-effects is mind blowing. Plus, my GE says once I start taking it I can’t come off it, ever.
I feel a bit pinned in on this. I could sure use some advice.
Thank you

 

[Jo-mom]

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).

 

[awoenker12]

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.

 

[Crommy]

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. I’m sorry to hear about your son’s complications.
He has me at moderate.

 

[Crommy]

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, I’ve 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.

 

[my little penguin]

Welcome
It’s 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 “normal “ “pristine “
No extra anything
Far less colds than my non ibd kiddo

It’s also helps his arthritis (dx at age 10)

It’s tough but controlled inflammation is always a good thing

 

[my little penguin]

Forgot they measure success by follow up colonoscopy- that look nice pink and healthy for intestines

 

[Jo-mom]

My Little Penguin - thank you for those stats - that is very helpful information.

 

[awoenker12]

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.

 

[Cable]

Hi Crommy,

I think I may be where you’re at, kind of. There are multille patchy ulcerations in my proximal jejunum, no strictures and no granuloma however. Also some Ileitis. I haven’t technically received a formal Crohn’s diagnosis as all biopsies and bloodwork have been normal. Question, was any blood work you did ever abnormal?

 

[Crommy]

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.

 

[Cable]

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 crohn’s here: https://youtu.be/PEP7SmmPnqY in case yourninterested where they talk about different treatment options.

Hope all goes smoothly for you.

 

[my little penguin]

Cable you can have crohns and still have normal bloodwork
Everyone is different
Ds has normal bloodwork but crohns for 8 years now

 

[Cable]

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,

That’s what my doctor said too. This is all so new to me. I’m just really scared and having a lot of anxiety about it all. My doctor wants to wait for treatment but I’m scared it’ll get worse. That being said it is in accordance with the guidelines I’m just nervous.

 

[SB7]

I’m right there with you Cable. I was just told my Crohn’s is moderate. I’ve been on Pentasa for 10 years now. Blood tests Sed rate, Calprotectin, CrP all normal. Really don’t 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 don’t, and keep trying lifestyle changes and alternative methods. Wishing everyone well.

 

[Scipio]

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.

 

[Rose09]

I am about to start Humira next week too. I have Crohn's in the Colon, last colonoscopy in Feb showed diffuse inflammation and loss of vascular pattern in transverse and decending colon and some patches in rectum. This was done towards the end of a really bad flare. My calprotectin was 780 in December at the start of the flare. My flares have been spaced out from 4 months, 6 months and 2 yrs apart. The time between flares I feel fine. I've been on Lialda which i thought was helping.
It is very hard to commit to a new medication like Humira when not in a flare but I know inflammation causes damage even when we feel ok.

I had to get Pnuemovax vaccination last week and now arranging to get Shingrex before the Humira loading dose. Anyone advised to get these too ?

 

[Rose09]

Crommy, did you start Humira ? I hope it's been smooth sailing. I start next week....nervous.

 

[Crommy]

Hi Rose, I appreciate you reaching out. I have been on Humira since mid-February and it has gone well. A little about me...
I was in denial for several years regarding my Crohn's diagnosis because I have been asymptomatic the entire time. I tried Pentasa and the 8 pills a day became a burden to the point I lost interest. After a few unsuccessful camera endoscopies (that's a story by itself), my GE finally convinced me that if I didn't get on Humira I would become symptomatic and eventually need surgery. He and I spoke at length and he assured me the long list of side-effects are, while real, very rare and more likely to effect people already in poor health. I did the research and indeed the percentages of experienced symptoms are not much different from the controlled placebo group AND the general public. I had no argument at this point so we went through the insurance hoops to get me covered.
So far the injections have gone very well. Humira is now citrate-free so there is no discomfort in administering your dose as there was in the past with the old citrate version. I have no side effects to report, nor any improvement of symptoms as I didn't have any to improve on.
On thing you asked about, the pneumonia and shingles shots...those are standard protocol for Humira users. I have to tell you, the Shingrex shot can be rough. The day after I received my shot I could not get off the couch as I felt like I had a bad case of the flu. Thankfully I felt much better the following day. With that, I would recommend you get the shot somewhere on your calendar when you can spare a couple of potential recovery days. Hopefully it won't be the case.
I completely understand you being nervous about this. If you have any questions or just want someone to check in with, you are always welcome to contact me. Please keep us updated on your journey if possible.

 

[Lookingforhelp]

New member so go easy on me.
I’m an otherwise healthy 58 year-old male who has lived with silent Crohn’s for several years, no life-altering symptoms. I’ve 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. Humira’s list of possible side-effects is mind blowing. Plus, my GE says once I start taking it I can’t come off it, ever.
I feel a bit pinned in on this. I could sure use some advice.
Thank you

I quit Petensa within a few weeks of starting it I couldn't be doing with something like 12 tablets a day it made me feel bloated.
I was put on Humira it wasn't for me it effected me mentally I had to get off of it.
I explained all of my symptoms to my consultant only to be told he thinks we needed to double the dose to weekly injections.
I thought No thanks and stopped the humira the same week gradually week by week my mental health came back to normal and my physical health is far better.
I stopped almost a year ago now best thing I have ever done.
I'm not advising anyone to do the same but if you are faced with an ignorant consultant make sure you exhaust all options before committing to more drugs
Above all listen to your body.

 

[Rose09]

Commy, thanks for the update, so good to hear any success story! I also have no symptoms at present so I really am jumping into this with some anxiety mainly because I have only been on Lialda (like Pentasa) for the whole time, I have had to get my head around to leaping to Biologics but I know the aim is to prevent inflammation. I feel good now, but when i sit down and think about how awful i feel during a flare, I know i have to do something. My biggest fear is surgery if my colon packs in. I really thought i was heading that way in Feb. I never went to the hospital because by the evening my symptoms would settle a little but then mornings and some nights were terrible, I'm still trying to regain the weight I lost.
I actually sat down and read through all my email exchanges with my GI dr going back to 2015 to remind myself of how my flares look, It helped me pull my head out of the sand and remember. I think I tend to block out the worst parts in my head because it can get pretty bad and even traumatic at times.

I like the sound of your Dr, reassuring you and taking plenty of time to explain it all. My Dr is very nice but I usually feel rushed and overwhelmed. I saw him 2 weeks ago and still left feeling lost and I work in health care! It's a shock to be on the other side and give up my control to a point. I thought I was invincible! :lol2: I do prefer the fact I can give my own shots with Humira as opposed to infusions. That should help me gain back some control.

I have read that the Shingrix shot IS a tough one...I am not surprised you were feeling it the next day, it's supposed to be powerful and very effective. Good to know you have that protection, Shingles is horrible! My dad has had PHN pain daily for years since Shingles...so debilitating. I hope your second vaccine dose is not as bad for you. I can't get it yet because of shortage, that in itself has been stressful this week.

Thanks for the support, it really does help!

 

[Rose09]

Lookingforhelp, I'm sorry that you had a bad Humira experience, I have read a lot of different perspectives and know it is not for everyone. I would have felt the same about increasing the dose with those symptoms, doesn't make sense to increase. I agree with you ...listen to your body, we are our best advocates.

I take Lialda which is Mesalamine, I take 4 pills per day, 2 am & pm. My Dr said it works like Pentasa but obviously easier to take. Maybe look into that if your symptoms return. I know it only treats the top layer of mucosa and not the deeper layers that are affected in Crohn's but it did help me for quite a while...I had 2 yrs remission after starting it.