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How do you confirm remission? Is it too soon to know if Inflectra has me in remission?

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Ulcerative Colitis
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Posted 6/27/2022 5:48 PM (GMT -5)
So I started Inflectra last September. I continued to have a few symptoms and would flare at around 4 weeks from infusion. This March I was able to start getting my infusions every 4 weeks. Since my infusion in March I have not had a single symptom. I have been off all steroids since then and only take Lialda now in addition to Inflectra.
Can I be in remission this quickly? How do you confirm remission? Can it only be done with a colonoscopy? (I’m afraid to get one and mess with a good thing since I’m feeling great)
I see my doctor next Friday for a check up on my progress so of course I’ll ask all this then as well.
I just wanted to get some input from you all.
Posted 6/27/2022 7:06 PM (GMT -5)
1.) Symptomatic-remission is confirmed based on patient reported symptoms.

2.) There's inflammation labs that can be run, like Calprotectin stool test or C-Reactive Protein blood test, if you're in normal range then a remission can be determined.

3.) Endoscopic remission is the safest case, if biopsies show no signs of active inflammation then you're most likely to have a long-term remission.

Generally 1 or 2 is sufficient. Is 3 excessive? I'd say yes.
Posted 6/27/2022 7:14 PM (GMT -5)
iPoop:
So I had some labs done back in the beginning of April. They did the C reactive protein and it was 0.11 which I think is good? I had to reschedule the appt to discuss my progress and those labs so haven’t gotten to ask the doctor about that number.
Is the calprotectin a better test to determine remission? Wondering if I should ask for that at my appointment.
Posted 6/28/2022 1:54 AM (GMT -5)
C reactive protein often not helpful but can be indicative. I've had 0.7 with severe proctitis.
Calprotectin usually more useful, especially if you had a high value while flaring.
Posted 6/28/2022 8:30 AM (GMT -5)
My GI usually focuses on my Sed Rate, how I feel, and my symptoms.
Posted 6/28/2022 10:33 AM (GMT -5)
It sounds to me like you are on the right path to remission which is fantastic. I remember not long ago you said you felt so well that it was like not having UC.

My gi runs a calprotectin based on symptoms. I have other issues that can skew other labs, besides that, the calprotectin targets the gut. In all fairness, I've seen members post here about a calprotectin over 2000 & not have any symptoms, nothing is perfect for sure.

Talk to your gi, however, enjoy feeling well.
Posted 6/28/2022 4:00 PM (GMT -5)
Calprotectin works best when you have classic UC i.e. worst inflammation in the rectum, because it breaks down as it travels through your colon so the test is less sensitive to inflammation higher up. Furthermore it helps if you test yourself regularly so that you know what is "normal" for you during a flare and/or during remission. For me it's very diagnostic, but, I am very systematic about taking the sample in the same way each time (i.e. always the first poop of the day, when it's highest). And i have a lot of data points. I measure myself every 2-3 months in remission and during my last flare at one point we even went to weekly measurements so that we could be sure what was happening.
Most people have too few data points and taken inconsistently that can make it harder to interpret what the numbers mean. It can also become elevated if you take NSAIDs.
Posted 6/28/2022 5:57 PM (GMT -5)
Okay so it sounds like the calprotectin is a good test to ask for. My doctor might suggest it anyways but I’ll bring it up as well.
I’m feeling great, I would just love some confirmation that this is remission. I hope feeling the way I do is some indication that at least in the right direction
Posted 6/29/2022 6:42 AM (GMT -5)
You’re getting infusions every 4 weeks? Is it 5 mg each infusion?
Posted 6/29/2022 9:21 AM (GMT -5)
Rusty: yes I get 5mg infusions every 4 weeks
Posted 6/29/2022 11:58 AM (GMT -5)
Haley -- once I switched to every 4 weeks, I was symptom free in about a month so yes, it can happen that fast. Remission was confirmed by a scope about 6 months later, but I was sure I was fine without that. I told my doc after the scope that I would have cried if he said he had found any inflammation. My crp & sed rates are always a little higher than normal even in remission. When I am flaring they can be off the charts though.

Congrats on feeling fine!!!
Posted 6/30/2022 1:43 PM (GMT -5)
The most non-invasive way of confirming remission is with stool test (like calprotectin), blood work, and patient symptom reporting. 1 in 8 IBD patients suffers an exacerbation of their condition from getting scoped. I am one of those patients, which is why I rarely get scopes. The biopsies trigger major inflammaton and sometimes a flare that was 4/10 becomes 9-10/10 after a scope.

Generally speaking, if a medication has eliminated your symptoms, it doesn't necessarily mean your gut mucosa has fully healed. That takes a longer time period. However, correct treatments can induce remission very quickly. I have found that working with the reductive theory of disease, which states that hydrogen peroxide is the root cause of UC, has led to my fastest remission ever.
Posted 6/30/2022 2:05 PM (GMT -5)
How long does it take for the mucosa to heal after symptoms have stopped?
Posted 6/30/2022 3:44 PM (GMT -5)
If you have no symptoms, can eat whatever you want, have 1-3 BMs per day that are well formed, and your lab reports show no indicators, then you are probably in remission and your mucosa has healed.
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