12 year old having problems with Remicade

[mommyto3kidos]

My daughter was diagnosed with Crohns almost a year ago. She was skin and bones, lethargic, covered in a rash and had horrible joint pain. She was scoped and the GI specialist said that she was a text book case. He also said that she was having a severe enough flare that she would be hard to manage. We tried 6mp and it did nothing and so we did the jump to Remicade. Within 24 hours of her first infusion we noticed a huge change. She never made it a full 7 weeks between infusions, but we did 7 treatments with great success. Then disaster. Two infusions ago she had a reaction and couldn't breath. They filled her full of benedryl and steroids and did the drip over a very long period of time. She did get the full treatment though. However, the remicade didn't seem to work over the next couple of months like it had in the past. She had stomach pains and severe fatigue almost the entire time. We went in for our last remicade treatment and did pre med of benedry and tylenol before we went in. Again, she had the same reaction. They slowed down her drip and medicated her and we made it through again. Within 2 days, she was admitted to the hospital as her inflammation markers were through the roof. A CT scan showed that her illium was near her rib cage instead of down by her belly button where it belonged. After a week in the hospital on IV steroids we are home. She is still very very fatigued and having nausea and some pain. We are on oral steroids. She is not able to go to school. He wants to keep trying the remicade and I'm so confused. He said that her body could be attacking the remicade before it has a chance to work. Could? It really seems like that is exactly what is happening as she is not getting any relief from the remicade. He wants to up her dose of remicade as he believes that it is her best option for remission. Has anyone had remicade do this and have it turn around and work again? I'm just not finding the information and my daughter is suffering. Thanks for ANY advise or help. I feel like I am in way over my head.

 

[KayleighMeek]

I'm sorry your daughter is going through such a tough time at the moment. I had the same reaction to remicade couldn't breath and stopped working for me soon after. My doctor told me I had built up antibodies to the remicade and that's why it wasn't effective anymore. I then got moved onto humira which works in a similar way and apparently you are less likely to have a reaction as it isn't made with mouse proteins like remicade is. Is this something your daughter has tried or doctor has mentioned. It worked well for me longer than remicade did.
Good luck and I hope she finds relief soon x

 

[mommyto3kidos]

We have not tried Humira, but he said that Remicade was our best chance for making her feel better. I am starting to get the feeling that he has blinders on when it comes to the Remicade. She has had two very bad reactions and now is not getting any relief from the Remicade. Still, he wants to try it again next month.

 

[kllyeve]

The fact that she couldn't breath after an infusion is a huge red flag!! It means she is having an allergic reaction to the Remicade. Once you start to make antibodies against Remicade, they don't go away - your body only gets more efficient at making the antibodies leading to a stronger and faster reaction each time an exposure occurs.

I really wouldn't go through another infusion if it were me and I was having a reaction like this. Given the fact that she is also not having any symptom releif, I am not sure what the point would be.