Low Calprotectin and Remicade

[Kannassee]

I had to wait 3 months between my last two Remicade infusions, the first time because of having a procedure and the latest time because of a hiccup in my insurance.

Just the day before the last infusion, (more than 90 days from the last Remicade infusion) my Calprotectin levels were 46 and CR 0.4...so not much inflammation.
I don't think there should have been a lot of Remicade antibodies left in my system after 90 days.

What are the general recommendations with these biologics? Should I keep getting them forever?

My Calprotectin levels were high while I had the stricture ( 580 ) and with Remicade they went down a little to around 300.

Only after they dilated my anastomotic stricture the values went down to around 87 and these last time to 46 (even after 90 days)

Maybe there was bad bacteria in the ileum since the food could not pass by and maybe it got fermented because of the stricture? and I got inflammation there because of that?

or maybe more probably this is all just wishful thinking.....

 

[my little penguin]

Generally you stay in biologics as long as they are working
Low fecal cal means it was working

yes they say “for life “
But most biologics do stop working for an individual.
We were told remicade would be “for life” for my kiddo when he started remicade at age 8
In his case -not so much
8 months later and two allergic reactions he was switched to humira
Which was again “for life “
That lasted around 5 plus years
Before moving to Stelara in 2017

I no longer consider a med
Any med for life
And each switch revealed how much the biologic was helping
Some folks here have gotten at least 10 years out of remicade
So hope it keeps working as long as it can
Healthy pink intestine is the goal

 

[Kannassee]

…..thanks a lot!!’….yup, pink, not white….

 

[Pangolin]

This is very interesting. I've wondered before if dilation or stricturotomy would reduce inflammation, and I even asked a surgeon about it. I was told that the procedures reduce symptoms but do not really reduce inflammation, but your case indicates that at least some of the time it actually does reduce inflammation.

This is actually a really important piece of data and may mean that dilation or stricturotomy make sense in a lot more cases.

Anyway, there's considerable debate about when to stop biologics. One study I saw regarding stopping Remicade was that patients who had achieved both mucosal healing and bowel wall thickness normalization were very likely to be able to stop Remicade with no relapse.

 

[Pangolin]

Here's a related video, a little old but still good:

 

[Lisa]

Anyway, there's considerable debate about when to stop biologics. One study I saw regarding stopping Remicade was that patients who had achieved both mucosal healing and bowel wall thickness normalization were very likely to be able to stop Remicade with no relapse.

I personally would not want to stop Remicade - although I've been in clinical remission for years while on it.....I had fistulizing disease and would be afraid that would rear its' ugly head again if I wasn't on the biologic.....the risk just isn't worth it to me as long as my insurance will continue to pay!

When I was younger the thought was to stop medication once clinical remission was achieved.....my periods of remission became shorter and shorter over the years doing this and my disease got worse and worse....

 

[Pangolin]

I think there are some huge epistemological and definitional problems in Crohn's, and defining remission is one of them. "Clinical remission" may be too low a bar to stop Remicade if it helped get you there.