Remicade only seems to work ~every other time?

Hi all,

I'm really confused and upset. When I was hospitalized this past summer, remicade was, as it is for many UC patients, my miracle. After trying everything else it immediately got my symptoms under control and it felt like I had my life back. My first dose was early August. I had no issues with it until early November, when I had a flare. Put on prednisone and had to tough it out until my next December infusion which worked like a charm. Things were fine from then basically until now with a few bumps in the road.

I started having abdominal pain, a tiiiny bit of blood and urgency before my last infusion (April 18th) and was so grateful that I was finally getting my infusion so it would get better. Wrrrooongggg. Since then I've been rapidly deteriorating and unable to go to work w/ severe abdominal pain, nausea, vomiting (just once), blood, urgency with very little production and complete loss of appetite. Been thrown on Pred again which absolutely kills me and nothing seems to be changing except the fact that my face has blown up the size of a planet

I guess I'm just wondering - is this normal? I did a level around my November flare and everything was right where it should be. I guess things can change but it just seems to me that if Rem was completely not working for me i wouldn't feel terrible one infusion and great the next. I really can't deal with this cycle - I just want something that works and keeps working. I especially can't deal with being on and off prednisone constantly. It makes me feel terrible physically and horrifically depressed.

I'm only on 20mg right now but my GI doesn't believe in going above 40mg so I doubt they'll bump me. I don't know what to do. I feel like I'm going insane and I don't have the strength to deal with this anymore. I'm only 19 and only been diagnosed ~10 months. I don't know how some of you have been dealing with this 30+ years. I can't do that. This kills me.

Hi. Sorry for your troubles. Did your doc run a Prometheus test to see how well that you are processing the remicade? I've been on it myself for a few yrs. and still have to use Lialda and enemas alongside.

Hang in there, you are not alone and it's early in your treatment. Don't allow it to be the center of your thoughts.

Thanks everyone. As far as symptoms before remicade, I was severely ill. I dropped about 40lbs (all been gained back and more thanks Prednisone) and the primary reason for my hospitalization was "chronic blood loss." Lost too much blood to have strength to stand or walk and had to have two blood transfusions my first night in the hospital. I was also in severe pain with severe urgency and frequency, the worst I can remember is ~30+ in a day, probably half of which were exclusively blood.

I haven't made any extreme changes - I was a vegan when I got sick but that clearly didn't do me any favors so I stopped. Just generally trying to treat my body well. I do take probiotics and vitamin D as well as a general one-a-day multivitamin.

I may inquire about oral mesalamine again but tried Rowasa once and it was an absolute nightmare. Don't think I'll ever be able to try again for trauma related reasons if nothing else.

I did do a level (what my hospital calls the Prometheus test) around my second flare in Nov and my GI was happy with the results. Not sure why any of this is happening but I guess time will tell.

I had a similar experience with Remicade. At first, I felt better after infusions, but I actually felt worse in the first couple of days following the last two infusions. I didn't have antibodies to Remicade, and my levels were appropriate. My doctors said that meant Remicade didn't work for me. The part of that that baffles me is that I definitely saw improvement initially with Remicade ... my colon was almost completely healed, and then boom, something changed. I feel like "controlling" UC is like balancing on a tightrope. Good luck with your situation and finding balance!

This happened to me. After my third infusion I got down to about 1-2 BMs a day without much urgency for a little while and then all hell broke lose again.

Not sure why, but saying it happened to me as well. Sorry.