2 bad experiences with Remicade infusion, has this happened to anyone else?

[borderholic]

I have had Crohn's for about 37 years. In 2002 I was put on Remicade and the infusions would last about 4 hours give or take 15 min. I lived in Maryland at the time, and the PA that gave the infusion was the best. She always said that you can't push the Remicade through to fast, besides possible complications, she said your system could not intake the medicine that fast and it would be just like throwing water down a sink.

When I moved to NY, I traveled back to Maryland twice for my infusions. When found a Gastro who did the infusions I made an appointment. I handed him my files from the past 15 years. I looked at them briefly and told me that I don't have Crohn's. He was going to refuse to authorize the infusions. I told him he didn't want to treat me, that was fine. Just sign off on your notes that you said I do not have Crohn's disease. I then told him I wanted his notes within a week, because I was going to submit it to my insurance company who have all my records indicating that I in fact do have Crohn's.

Needless to say he gave in. I was seeing his group for about 2 years, never had a repeat visit with the Doctor, no follow-ups, no blood work, no scoping, nothing.

Then I had one infusion that was about just under 3 hours. It felt like a flu. I was very tired run down and I felt like that for about 3 days. I called the Dr. Office and they said to just monitor it to see if it got worse.

Then on my very last infusion I was out in about 2 hours. The RN who gives the infusion had a headache and turned off the lights and just cranked up the Remicade. I felt like crap, I was on the sofa for 3 days, low grade temp and chills. I called and again they said just monitor it.

I found another Gastro, told him what happened the last 2 infusions with Remicade. He put me on Humira. It has never worked as good as the Remicade for me. He wants to have me start the Methatrexit(?), sorry not sure how it's spelled.

When I was on the Remicade I felt great, very few if ever did I have a flare up. Now after 3 years on Humira, they found thickening of the colon walls and inflammation on both side. I have always have inflammation just on the left side.

I can't help but think if my Remicade was given properly I would still be doing good..

Has anyone else any similar stories?

 

[sickofcrohns]

I have had allergic reactions to Remicade three times -- both times when I was put on Benadryl as a pre-med (x2) and once when I was given my usual Solucortef. The second Benadryl reaction was similar to what you described, but accompanied by hives and restricted breathing. (The other reactions were only hives and restricted breathing, etc).

I'm still on Remicade. With the right pre-meds, it works for me -- 9 years and counting!

Good luck finding some meds that work for you. Hope you feel better soon.

PS -- Methotrexate did nothing for me but give me side effects, but other people have found it worked well for them.

 

[Johnnysmom]

My only experience with Remicade is from reading the parent forum posts but I do know that the rate of administration is very important. There are several kids who have had reactions because the infusion rate was too fast. The pediatric nurses seem to always be good about explaining this and adjusting.

Hopefully there will be a few along shortly to share their stories. Several use pre-meds as well. (((Hugs)))

 

[sickofcrohns]

Agreed. Too fast a drip can make you feel gross.

Sounds like your nurse may have caused some problems there.