So I still have chronic pouchitis, even through I take Cipro daily, Humria once a week and MTX once a week.
The doctor is considering put me on Remicade. He thinks it will help with my fistula's too, as I have two with seton's in place. I personally don't want another seton.
Just wondering what people's experience is with Remicade. I have read good things about it.
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I have been on Remicade for 3 years and it improved my Pouch inflammation significantly. It has enabled me to reduce my antibiotic dosages very significantly. In the 3 years I have been taking it no real flares like I had before going on it. Also haven’t had any side effects.
I should mention I have likely or possible Crohn’s Disease and inflammation in my neoterminal ileum (also improved from Remicade) but no history of fistulas. I should reiterate here as I said elsewhere that the diagnosis is irrelevant and Remicade will improve any small bowel inflammation regardless of what it is arbitrarily labeled.
That sounds just what I need. I'm hoping it allows me to eat healthy again.
At first, Remicade felt amazing but after the fifth infusion I had 41 days of migraines in seven weeks. I have had migraines three or four times a year for the last 30 years so that probably contributed to it. I am on my sixth infusion and had one migraine in three weeks. I will continue with it because the benefits outweigh the side effects unless I hit another streak of migraines. I have only had to be on antibiotics once since I started the biologic. I hope this post makes sense currently on sumatriptan and OXY for the migraine. I hope you find relief!
I did not have good luck with Remicade. After the second infusion, I was light headed and dizzy. I actually tried to pass out in the infusion lab. When I got home, I had a low grade fever and muscle pain. After the third infusion, about 2 hours later, I experienced a low grade fever again and had severe muscle pain that made it painful to even sit in my van's seat. This time it lasted a couple of long painful days.
I had previously been infused with Remicade 12 years ago (one infusion), before my j pouch surgery, but it didn't stop the flair, so I didn't have anymore. I don't know if that was still in my system somehow that caused the painful side effects or not.
I know Remicade has helped a lot of people, but it didn't work for me. I am now on entyvio infusions and so far after two, no side effects. Praying it stays that way.
Praying Remicade works for you with no side affects and tons of blessing!! One hint: take a driver with you to the first few infusions until you know whether or not your body will have a reaction to it.
How often do you get the infusions?
I get infused every six weeks. 900 mg. No side effects whatsoever
In the beginning stage Remicade is given a little differently: 1 infusion, then the 2nd two weeks later, finally the third 4 weeks later. After those introductory infusions the medicine can be administered every 6-8 weeks. My infusion nurses explained it is not unusual to experience side-effects after the second infusion and rarely after the third infusion.
I was also given Tylenol and Benadryl prior to each infusion.
I had Remicade for 1yr , it helped a bit with the pouch not a significant change. It helped amazingly for my arthritis until it stopped working. I'm now on Humira and MTX for my arthritis.
The best results I have got from controlling pouchitis is through diet, it involves alot of dedication and micro managing but it has worked in my scenario.
Drone3 - What do you do for diet?
Remi was a miracle drug, after only 2 infusions it put me into remission for over 2 years. But I got really sick on those 2 infusions and had to stop. I’m now on Entyvio, another miracle drug with a few minor side effects for the last 3 years.
