Remicade and Seizures

[Dragon]

My son, 19, was diagnosed with Crohn's when he was 13. He was very sick at that point and quickly escalated to Remicade. Remicade was wonderful for him. It definitely prevented major surgery. In the middle of his 13th infusion, he had his first grand-mal (tonic clonic) seizure. He stayed on Keppra for almost 2 years and was completely seizure free. His dr and I decided to take him off the keppra. About 5 months off the Keppra, he had a second grand mal (tonic clonic) seizure. He has been on the Keppra ever since and has been seizure free. As for his Crohn's, we had a colonoscopy last week and he had no active Crohn's. He is currently taking entocort, apriso, and methotrexate for the Crohn's, and we are beginning to start reducing his medication regime.

While we are reducing meds, I am considering stopping the Keppra again. I am trying to find other people who had remicade induced seizures. I would like to hear what other people's experiences have been. My son had multiple seizure risks factors including a family history and an Autism diagnosis.

As a side note, even knowing that the remicade would induce a seizure disorder in my son, I would still choose it for him back then. He spent an entire summer in the hospital that year. He was getting sicker by the minute. Since his first remicade infusion, he has not had a single Crohn's related hospital admission. It is a wonder drug for those who need it, even if it does come at a price.

Thank you in advance to anyone who shares their experiences.

 

[Jennifer]

I'm sorry your son went through all that and I hope he never has one again. I'm also very sorry for the late reply.

I was trying to find some threads that have to do with Remicade and seizures by using the Search function, they may help:
http://www.crohnsforum.com/showthread.php?t=8649

While searching I saw that Samboi mentioned having a seizure during an infusion of Remicade (Would you care to share more for Dragon Samboi?). http://www.crohnsforum.com/showpost.php?p=668646&postcount=4

Another member had a seizure on Remicade as well but they're an older member and haven't been online for quite some time. http://www.crohnsforum.com/showpost.php?p=84153&postcount=2

I don't have any personal experience but hopefully someone else will chime in.

 

[Samboi]

Hi Dragon
I had a seizure mid infusion. The infusion was stopped and I was given something to stop the seizure - although I have no idea what it was.
I was pretty delirious afterwards when I became conscious again.
I have had no further seizures since. And of course I refused to take Remicade again - not that they were suggesting I should.
The doctors were not sure why the seizure happened, however I had two infusions approx ten years prior - so they think it might have been linked to having an extreme reaction to antibodies.
It was a terrifying experience and it was probably the first moment in which I realised that Crohns might actually kill me.
I hope everything goes well for your son.

 

[Dragon]

Thanks Samboi!
According to my son's dr at the time, remicade lowers the seizure threshold is some people. It's a complicated question, and I appreciate your input. His drs have said no more TNF inhibitors for him. He,also, has a Aunt with epilepsy and Autism, which puts him at a high risk of seizures to begin with. His first seizure was surrounded by medical staff, which is the best way. His second was in the bathroom. We never did figured out exactly what he hit his head on, but he had a "cool" scar by his eyebrow to show for it. Needless to say, I'm wary of taking him off his meds. Thanks for the input.

 

[Bev]

I have epilepsy - Remicade lowers the seizure threshold. My Keppra had to be increased. The odds are if you the seizures will return. I'm not happy with my situation either, but seizures are horrible.