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Remicade 10 yeras- no endoscopic full remisson

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Ulcerative Colitis
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Posted 2/12/2021 4:55 AM (GMT -6)
I have been on remicade for 10 years, full clinical remisson, blood tests normal, normal calprotectin, no remicade antibodies, but colonoscopy has never shown a completely healed colon.I do colonoscopy every 2 years, and there is always some mild inflammation present, hiperemic mucos and pseudopolyps. My doctor wants to continue Remicade every 8 weeks, but I am afraid of wasting time, risking colon cancer or new flare up. Do you think it’s time for a new biological ? I am happy for 10 good years but I am afraid of the fact that the gut has always been mildly inflamed
Posted 2/12/2021 6:12 AM (GMT -6)
Luna,

Did you experiencing any extra-intestional symptoms during the 10-years when the mild infammation was present?
Posted 2/12/2021 6:23 AM (GMT -6)
No symptoms ! Normal stool, no blood, no pain. I lived as if the disease did not exist.
Posted 2/12/2021 6:31 AM (GMT -6)
are your fears more grounded in cancer risk at this stage due to long term mild inflammation?....does you doc consider you clinically as in a flare?
Posted 2/12/2021 12:21 PM (GMT -6)
You could add rectal mesalamine to see if that helps. What was the extent of the mucosal hyperemia...rectum only? Where are the psudopolyps... one or 2 or many?

q
Posted 2/16/2021 1:16 AM (GMT -6)
Hi quincy,
10 years ago I had left sided colitis, and pseudopolyps are on 30 cm, many of them. Mocosal hyperemia is present throughout the left side, rectum and sigmoid colon. I have no simptoms, 1 bms day, but now I am afraid of potential risk of colon cancer after 10 years of flare in colon. My docotro consider mi in clinical remisson.
With remicade I take Pentaza 2x2, sometimes Salofalk 1mg rectal and vivomix probiotik.
I think this is a powerful therapy that obviously can’t heal my colon.
My next colonoscopy is in a year, until then I will try to get rid of gluten, dairy, processed foods and see if it might be a trigger for mucosal recovery.
Posted 2/16/2021 8:53 AM (GMT -6)
Luna -- that is a difficult decision. You don't have any symptoms that affect your quality of life. But I understand the worries about long term inflammation. I am in a similar boat. Remi has given me my life back, but I don't feel like I am in complete remission. I am due for a colonoscopy this year so I guess I will know then what my colon looks like. I don't want to rock the boat and switch to a different med that I don't know would work for me any better. But I do worry about long term risks of cancer since my mother had colon cancer (she had it when she was in her mid 70s and lived cancer free after surgery to remove just the cancerous area until she died at 94).

If remi is your first biologic you have lots of options. Since you have don't have any symptoms maybe you could switch to Entyvio since that is specifically for the colon,
Posted 2/16/2021 12:10 PM (GMT -6)
Luna...when was your last c-scope? And did you have pseudopolyps as many as 10 years ago?

The dosage of salofalk suppositories is 1g/1000mg. For your concern regarding cancer and to cover the pseudopolyp area as well...you should consider Salofalk retention enemas at 2g or 4g. Give it a fair try and you can see at your next c-scope if it's helped.

q
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