Update: remicade failed

Hello

back again, things have been crazy in school so not much time for coming on here

quick recap: started entocort after small bowel inflammation, doesnt seem to be working because fecal calprotectin is still elevated

doc wants to discuss med changes

do you think I should have a scope before this? I did have one in January but I think it would be good to know how it looks inside
I didnt ask my doc yet, but im thinking of asking him, whats your opinion?

also, I'm really scared of stopping the remicade. it literally changed my life, overnight. It reduced my crp from 140ish to 70 overnight
reduced BMs significantly. allowed me to eat for the first time in weeks. Can my Colon go back to where it was as soon as all the infliximab leaves my body?
I believe that you need to wait for all the drug to be cleared before starting the next biologic, if the next biologic doesnt work its months of flaring for nothing

also, remicade seems to be doing an ok job of keeping my colon in check. is it worth it to throw away the not so good for the unknown? i might get to an awesome remission but I might also get to terribly sick.

what med would you switch too?
my options are likely 1) entyvio- good because reduced side effects and less immune suppression (working in a hospital) but its IV so would need to arrange appointments, also the past few remicades have been really hard to get a vein, need multiple sticks. also its slow acitng
2) stelara- so i heard its getting approved soon but when, dunno
its likely i can get it early
it works fast and its injections so i can do it at home
but...it has more immune suppresion than entyvio and i will be wokring in the hospital


thanks guys, I know this post is everywhere cuz I am feeling kind of anxious about this
please give me your advice, suggestions, horror stories, tips...

What are your daily symptoms? Frequency and urgency. Are you getting blockages in your small intestine?

I'd kick the can down the road if things are manageable, switching always runs the risk of making things worse. If it is an important semester than you'd probably want to wait if things IBD symptom-wise are good.

I've always gone from one medication to the next without having to wait, other than the typical fighting with the insurance company for approval.

My GI thinks that the Stelara is starting to work for me because I've been able to decrease my antibiotic usage significantly. I started out at a really low dosage of Stelara and I don't think it had the effect that it should have for me but after 6 months maybe things have improved.

I'd really wait for IBD approval from the FDA before you start Stelara, you'll probably have better results than I had due to the higher dosage that you will be given.

Interestingly enough, my GI sent a lot of people to the trial for Xeljanz and she said she didn't think it would do anything for me in particular. She said the patients she had who didn't respond, also didn't respond to Xeljanz. I guess for the responders, it's more hopeful. I am just so ecstatic that i don't have to worry about any of this anymore. For me, surgery has been the ultimate success, no more drugs for life! No more doctor appointments! No more flare ups!

Dikid said...

at this point I am more scared of symptoms that would make school impossible (frequent accidents/severe nausea and vommiting)

Dikid,

I'd get meds that help with those symptoms, I see that you have Zofran but you might also want an anti-spasm (levbid) and a bowl slowing agent like Lomotil. Most of these work really fast.

They don't help with the causes but they will help with some of the symptoms and you can manage through until you decide on which med that you want to try next.

I wouldn't worry about inflammation in the short-term but you don't want inflammation long term.

Ya I tend to agree with that
I'm going to speak to my doc later this week and we shall make a plan of action
Maybe the elimination diet will be enough for symptoms until we can inflammation down
I really appreciate your advice

How do they know the small bowel inflammation is Crohn's? Is it in your terminal ileum or further up? Sorry if these questions seem a bit nosy, but there are other causes of small bowel inflammation besides Crohn's and if you have 'classic' UC in the colon, I would be wondering whether the small bowel inflammation really was Crohn's or not. It's not impossible for Crohn's and UC to co-exist - there have been case studies - but it's very rare, as you might imagine.

Also, it's odd for the Remicade to work on the colon but not the small bowel, which to me at least suggests the small bowel inflammation might have another cause.

Crohn's has serious implications for any future surgery you might need, so I wouldn't accept the diagnosis without making darn sure it's that.

Ok thanks y'all

Good questions
So I asked my doc and based on imaging it's for sure Crohns
Also, not an infectious cause or SIBO

A few parts of my colon were inflamed but it was in ok form
The small vowel was worse off

I believe the inflammation seen was limited to illeum
But... Imaging not as clear as scope

What kinds of questions do I ask my doc when I speak to him?

Thanks

We have not discussed humira, I wasn't aware it had different efficacy for cd or UC
When we started the entocort he mentioned entyvio
I read some stuff about stelara that made me want to try it
So I will bring that up with him

Speaking from experience, I wouldn't start Stelara until you can get the CD dose. I started out with Stelara at the lower dosing and it worked really well but not for very long, after 6 months it is starting to work and I'm able to get off of antibiotics. The insurance company finally approved the higher dose and it's kicked in after the 2nd 90 mg injection.