Posted 12/2/2016 10:46 PM (GMT 0)
Hello all!!
I have a Remi question.
Let me give you a quick background with just the necessary information. Don't want to overload/bore you!
I was diagnosed with UP in November 2014. Over the course of the past two years my symptoms have been steadily getting worse. I was on mesalamine suppositories/enemas and an oral tablet to "manage" my symptoms. I was still having bleeding, mucus, frequency, diarrhea, urgency, etc.
This past spring I had a major DVT and PE and was hospitalized for about a week. I was put on blood thinners as part of my treatment. about a month into recovery I suffered from a MAJOR UC flare and almost bled to death (no joke)! Was hospitalized again and had a colonoscopy done that showed my disease had progressed to pancolitis.
My GI put me on an 8 week taper of prednisone to hold me over until we could start Remicade. Of course the prednisone worked wonders and I thought everything was back to normal and I was healed. I started the Remicade at the beginning of August. I was feeling really great after my loading doses. I finished them up around the middle of September and also started taking 6mp at that time.
At the beginning of October I came down with a really high fever and symptoms very similar to UC symptoms. For awhile I thought maybe it was just a virus. However, the UC symptoms hung around and continued to get worse over the course of the month. I was coming down with really high fevers about once a week.
I received a dose of Remicade at the beginning of November and felt better for maybe 3 days. Then I was super sick again.
By the middle of November I was going to the bathroom 15-20 times a day. My stools had absolutely no form and I was again losing large amounts of blood with each bowel movement. I lost 20 pounds over the course of about 30 days. I honestly had days where I just wanted to lay down and die. I know, super dramatic, but that is truly how awful I felt.
I finally convinced my doctor after pathogen tests and stool tests and lots of blood work that this was a flare and not a virus. She did a flex sig last week and found that my disease activity is much worse. The inflammation has increased, there is lots of friability and granularity, ulcers, congestion, etc. She actually said "it looks like someone took out your colon, turned it inside out, and dragged it across asphalt."
SO I had blood work done earlier this week to determine the levels of Remicade in my system. Her theory was that possibly I had built up antibodies to the drug.
However, my Remicade level is .7 and I have no detectable antibodies. My last dose was the beginning of November, so I think my level is still good?
Does this mean that my body is just not responding to this kind of drug? Has anyone had something similar happen to them and what is the next step in terms of drug therapy? If I failed Remicade, does that mean all anti-tnf drugs won't work for me?
I have heard of people just needed larger doses of Remicade. Would that be a possible next step?
Any wisdom and insight is welcome!