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Infliximab (Remicade) question.

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Crohn's Disease
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Posted 10/19/2016 8:57 PM (GMT 0)
Im a little confused. The past 3 years Ive been battling terrible perianal fistulas and abscesses. Since my first abscess I was told I would start infliximab once any infection had cleared. 9 operations later and 5 setons im still draining pus heavily. I seen my surgeon last week. I told him about the heavy pus drainage, he had a look around my seton placements and said im good to start infliximab and would send out an emergency appointment. He had no time to sit with me and talk, he is always in a rush. I thought one could not start infliximab if they had on going infection. As ive been waiting 3 years to start, but always stopped due to pus/infection. Surgeon did say to go ahead since the puss was draining and not in a closed pocket. Im like a watering can right now from the seton sites and multiple times a day I drain pus from my rectum. Can we really start infliximab with this much infection? Its got me very worried about going ahead.
Posted 10/20/2016 2:10 AM (GMT 0)
I think you need a second opinion from someone that will actually spend time talking. Has the pus been cultured to see if there is definitely an infection? I had a nasty time with a fistula for about 3 years as well. Mostly doctors weren't too concerned if it was draining and they did cultures to see if it was actively Infected. Good luck! I hope you get to start remicade soon.
Posted 10/20/2016 3:05 AM (GMT 0)
I too think you should have a second opinion. Do you have fever? Insist that you know whether there is infection or not. The reason why we are put on Remicade is to drain the pus and heal the fistula. If you get sure it's not infectious, go on with remicade.
Posted 10/20/2016 3:22 AM (GMT 0)
Actually, I would think that starting Remicade would be the better option because it would help the abscesses and fistulae heal. When I had my first abscess-turned-fistula, they wanted to start me on Remicade immediately. I held off because I was in the middle of moving states and didn't want to try to coordinate loading doses with a new doctor. Now I really regret that decision because my fistula never closed.
Posted 10/23/2016 1:09 AM (GMT 0)
I agree with scifigal. Remicade can make a huge difference in healing fistulas. Do you have a fever at all? If you don't have a fever and it is draining well I would think starting Remicade would be a good option to improve things. The longer you wait the harder it is for the Remicade to work as well. I was on Remicade for 8 years and had a few sitauations come up about illness or infection. As long as I didn't have a fever they always wanted to go ahead with my infusions. I never had any issues. However I have never had an abscess, only a fistula.
Posted 10/25/2016 2:01 PM (GMT 0)
Thank you everyone for your replies. On the day of the infusion I discussed with the nurse about my draining abscess. She immediately bleeped my gastro team and they confirmed to go ahead as the infection is draining, not contained. Blood work was all good and I had no fever. The infusion went well, no reactions, and half way though I noticed a difference in my arthritic pain in my knee, before hand I couldnt bear weight or bend but I could start to do these. I didnt think it could work so fast but the nurse said its fast acting for some things. My drainage today (2nd day) has reduced by half easily, its still heavy, but much less. I have a sore throat this morning, and runny nose, I hope this is the way forward for me.
Posted 10/25/2016 2:40 PM (GMT 0)
That is so great! I am glad it is already working well for you. Interestingly enough, a sore throat is a side effect of Remicade. Who knows why! But I've had a chronic sore throat for almost 5 years now, lol.
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