Thanks for checking back in and following up. Although I truly had hoped you'd say remission!
If you're almost a year into remicade and all of those other medications without a complete remission, have you and your doctor talked about
upping your remicade dosage or switching to another biologic (like entyvio or xeljanz)? You can run a blood test 24-hours before your next remicade/infliximab infusion to see what the very lowest concentration of remi is within your system and whether you've developed antibodies to it. If true, upping your dosage from 5mgs per kilogram to 10mgs per kilogram, and/or decreasing the frequency of your infusions from 8 week intervals to 6 or 4 week intervals can help. It's also quite possible you've failed remicade. https://www.labcorp.com/test-menu/29496/infliximab-concentration-and-anti-infliximab-antibody
8-months on pred is not good.
1.) I still lose blood daily, is this normal? No this is not normal or acceptable for long term for us. You're still inflamed and flaring. What is normal for us is a remission, an absence of all UC symptoms.
2.) Am I just in early stages of my condition where pain will come later? Severe inflammation can result in a lot of lower abdominal pains. For example: when I was pooping 20+ times a day I had short, sharp knife-stabbing pains, the type that takes your breath away and doubles you over in agony. I had more mild and long lasting aching during the same flare as I healed. We can get various joint aches during flares as well (about
25% of us do, the most common extra-intestinal manifestation of UC).
3.) I still go to the toilet regular, in the afternoon this just becomes loose stool rather than blood. Is this normal? Again, remission is normal which is 1-2 formed, non-urgent bms a day free of blood. So, no, not normal.
4.) What should I expect out or remission if I ever achieve it?
Moderator Ulcerative Colitis
John, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasaIs it unpatriotic to wipe your bumm with George Washington bills if there's no tp in a stall and you're otherwise in dire-straights? I think George would understand...
Post Edited (iPoop) : 1/18/2019 7:02:52 AM (GMT-7)