Any bad side effects being on Remicade?

I was on Remicade for a little over a year. I never had any side effects. It was not effective treating my UC so I stopped it. No one really knows for sure what the long term side effects are since it's a relatively new drug....only been in use since 1998. Everyone is so different. My niece was on Remicade for her Crohns and she got Lupus from it. Thank goodness it went away as soon as she stopped the Remicade. My mom gets it for her RA with no issues.

I get joint pain from it....plus it doesn't keep me in full remission. I don't know what I would call my situation right now.

I'm on Asacol 800mgx6 pills a day, remicade every 6 weeks at max dose(640ml), gluten free (as much as i can), dairy free (as much as i can)...following a SCD diet but adding rice and potatoes for carbs.


My quality of life sucks to be honest, but I can work. I go 2-3 times in the morning...maybe 1 time at lunch and 1-2 evening. My stool is skinny "logs"...I don't actually notice blood...there is a bit though...nothing in the toilet bowl.

When I have to go....I have maybe 1-2 minutes to find the toilet....maybe 5 minutes if I use Jedi mind skills. I use solafalk enema from time to time but it's hard to hold in.

I'm hoping to try LDN and fecal t. one of these days...

I got headaches and a lot of pain in my fingers, hands, elbows, and the infusion site. Besides that, nothing serious but I stopped after 5 infusions because it was not keeping me in remission. My friend developed Lupus from Remicade though so I know that is a possibility.