Hi all. I've had my j-pouch for about 14 years. Have had pouchitis pretty much the entire time I've had my pouch. I tried Entyvio last year and it unfortunately didn't work. I've been having a lot of flares and have been antibiotic dependent to get through them. I recently went through a massive flare and my GI doc got me approved for Remicade. Over the past 3 weeks my flare started to get better and I had my first remicade infusion on 7/1. I noticed that night I started to flare again and it's gotten slightly worse over the past couple days. Now I'm afraid to get my second infusion as it might put me into a massive flare (scheduled 7/14). Has anyone ever had this happen? If so did you opt to get another infusion or did you stop?
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After just 3 days I think it’s more likely that the Remicade isn’t doing anything yet, and the flare is just part of your baseline ebb and flow. Is your antibiotic usage pattern different this time than it has been in the past?
My antibiotic usage since Entyvio has been terrible. I got to a point where I was only taking 1-2 pills a week or sometimes every 2 weeks. Was rotating between augmentin and Flagyl. The first 2 infusions of Entyvio I felt ok, (Started January of 2020) but then after that I got worse and worse with each infusion. I flared so bad that I took a 2 week course of cipro (which I hadn't touched in 5 years) which calmed my flare down but resulted in 2 bouts of c diff, which I got cleared finally in January of this year. I was doing "ok" until March then I started to get massive flare, nothing was working and then in June I started getting better, Cipro started working, then I switched to Augmentin which was working for almost a week, I felt great the day of my infusion but that night start to flare again and it's been getting worse since that day. I cannot pinpoint anything else that has changed.
Remicade will have no effect positive or negative for probably 2 months, unless you have a reaction which will be IMMEDIATE. I actually got to personally witness a Remicade reaction in the Remicade infusion room and it's systemic and not what you described. You would be flushed and have a warm sensation on one side and your vitals would be off which is why they are checked every half hour during the infusion.
It's likely what Scott said - you are flaring and the Remicade isn't built up enough in your system to do anything about it, nor will it for around 2 months or possibly more. I realize we live in an instant gratification society in which results are demanded immediately, but it just isn't how this medication works. There is almost certainly no cause and effect relationship between Remicade and the symptoms you have described.
Yes I guess that's what i was wondering, if this was just a coincidence. I'm not looking for instant results, I understand that this can take months. I know I'm not having an allergic reaction, as what they were looking for during the infusion. I guess I'm just nervous since I had a bad experience with Entyvio and Remicade didn't work for me when I had UC. I just don't want this to make me worse than I already am and if that was the case ti stop it so I don't end up I'm the hospital.
I totally understand your concern. I would speak to your doctor about how long you should give it before you potentially reach the point of diminishing returns from ineffective treatment.
Until the 2 month mark, you might also want to talk to your Doc about increasing antibiotics dosages. Then if you are better, gradually ease back the antibiotic dosages and see if the Remicade kicks in.
Yes thank you again for your response. I've called to see if I can get extra meds on hand. Just hoping I don't get Cdiff again. Been doubling up on the probiotics as well. I will leave an update after I get my next infusion
Did they put you on azathioprine or methotrexate in advance of beginning Remicade? This is to prevent anti-Remicade antibodies. It is particularly needed if you had been on Remicade before. The antibodies do not make you have a reaction, but prevent the Remicade from being effective. If they did not test for antibodies, you should probably have this done prior to your next infusion. I have antibody testing every year.
Nope they did not. I had remicade 14 years ago. Not sure if my GI doctor even knows I've had it before since I've moved states since I had it. I can send her a message about it
Good idea. I had not even been on Remicade before and they started azathioprine (Imuran) in a low dose a few weeks before beginning Remicade. So far my antibody tests have remained negative for 5 years.
I was on Methotrexate for around 3 years for the reasons Jan mentioned. However, at some point it started causing my liver chemistries to go up, which really freaked out my GI doctor. After a couple months in a row of high liver chemistries, he ordered me to stop the Methotrexate (which was 12.5 mg weekly), but he did not replace it. So now I take Remicade naked with no sister drugs, and have gotten away with it for a few years now. Meanwhile, after he took me off Methotrexate, my liver chemistries went straight back to normal. I had taken Imuran in the early 1990s as a last ditch treatment of UC, and it too had to be stopped due to causing liver chemistry increases. My liver seems sensitive to those meds.
I did at some point about a year after starting Remicade have a Remicade test. The Remicade test is a kit that they send you to test the therapeutic level of Remicade in your blood. I want to say they waited for a year after I started Remicade, but it might have been 6 months. The test came back that my blood Remicade level was indeed therapeutic.
BTW- you absolutely should tell your GI you were on Remicade previously!!!!!! It's almost certain he or she would have given you Methotrexate or similar drug to resist antibody development and also suppress renal secretions of Remicade.
Yes I honestly didn't even think to tell them. I did leave them a message today regarding this. But yes that is my fear is all of the nasty side effects of these drugs.
Imuran (azathioprine) has a better safety profile than methotrexate. I have tolerated it fine for years and I even have fatty liver disease.
Talked to my doctors office yesterday. My GI will not approve Imuran or methotrexate at this point. Just want me to do just remicade. I am doing today to get tested for antibodies
Well, each case is individual, but good to have discussions about treatment options.
So to update everyone on Thursday July 8th I had a massive reaction that put me in the hospital. I found out a little over a week later that I have antibodies to Remicade. I am doing ok now and they are working on an approval for Stelara. My pouchitis flare is going down again and I definitely think it was the remicade that made things worse. Thank you all for your help!
Glad to hear you are doing OK now. Anti Remicade antibodies are a bummer! Hopefully they will be more proactive with preventing antibodies with Stelara.