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Remission Definition

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Ulcerative Colitis
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Posted 7/23/2019 6:34 AM (GMT 0)
I've noticed here how several armchair GIs define remission in terms of being steroid-free. Could someone kindly point me in the right direction of the lit out there that would preclude corticosteroids but not other so-called maintenance (biologics/mesalamines) to establish a clinical / endoscopic remission ?
Posted 7/23/2019 7:04 AM (GMT 0)
Because...from my understanding.....one will have to taper off the steroids since one should not remain on them indefinitely. Steroids are used as a treatment, not a maintenance.

q
Posted 7/23/2019 11:59 AM (GMT 0)
Remission simply means an absence of intestinal inflammation, and yes, it must be steroid-free. Remission includes the patient being on any medication other than steroids. Most, but not all of our symptoms are inflammation-based, so you/I should feel almost pre-diagnosis in a remission. Some of us have lingering IBS-like symptoms within a remission, so it doesn't mean normal for all.
Posted 7/24/2019 12:19 AM (GMT 0)
It basically means your inflammation is gone and you're not on any medications that will destroy your body, which are steroids. You can be on other meds like biologics because their safety profile is way, way better than steroids.

iPoop is right in that even in remission some of us have IBS type symptoms. I get occasional cramping, bloating, rapid transit, and urgency... but it's not all the time and I still average 1-2 BMs per day. I think for some people, when the gut has been through a major traumatic event like UC, the nervous system there gets hyper sensitive. Also, I still have to watch what I eat.
Posted 7/24/2019 2:35 AM (GMT 0)
Thank you all for taking the time to reply to my question smile
I guess in the end it doesn't really matter who defines what as that and why...
Posted 7/24/2019 9:10 AM (GMT 0)
for the record tho, no mention on any scientific lit on this yet that I can find. Just sayin'
Posted 7/24/2019 12:22 PM (GMT 0)
There's no universally accepted meaning/definition to the words "response to treatment" or "remission" within the scientific literature you'd see on pubmed. Rather each study defines it in their own way. It makes it rather hard to compare remission-rates, response-rates and other results across a lot of different studies. As far as guides our doctors use for management of our illnesses, there are definitions broadly accepted "symptomatic remission" (based purely on patient symptoms) and "endoscopic/deep/quiescent remission" which is clean biopsies/colonoscopy with no sign of active inflammation.

There's some attempt to standardize things using a Mayo Score as an example. https://www.ncbi.nlm.nih.gov/pmc/articles/pmc2597552/
Posted 7/24/2019 5:03 PM (GMT 0)
Is the point of the steroid or remission in general? What steroid exactly are you asking about?

q
Posted 7/27/2019 2:15 AM (GMT 0)
Quincy -- budesonide. It put me on remission (w/ Humira) and I guess I just don't understand how some folks here don't see the dangers associated with remaining on a biologic for the rest of your life but get all aghast with corticosteroids.
I've never taken prednisone but from what I've been reading on here, it's the devil's drug, so I stopped budesonide months ago (against doctor's advice) and am still feeling fine, last colonoscopy showed a normal colon, zero inflammation and zero signs of disease.
I want to say I'm in remission, but how could I be if a potentially lethal biologic keeps me in fool's paradise?

Apologies for beating the proverbial horse, but I'm relatively new to this.
Posted 7/27/2019 10:55 AM (GMT 0)
Biologics have been around 20-years now, they're not lethal or extreme lol. I've been on remicade 8-years now, still breathing without side effects, and still in a remission ;-)

Prednisone has near guarantee of giving you one or more of the following permanent side effects when used long term: osteoporosis, type ii diabetes, or glaucoma.

Biologics have rare, less then 1% odds of serious side effects. Entirely different. A lot lower risks with biologics compared to steroids.

I would advise you not to abruptly stop humira without doctor's okay.

Important to weigh the risks versus the benefits. Toward that end, a good read with the odds of side effects:

http://www.crohnscolitisfoundation.org/assets/pdfs/risk-and-benefits-transcript.pdf
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