11 year old daughter taking remicade for AS

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New Member

Date Joined May 2007
Total Posts : 1
   Posted 5/7/2007 6:10 PM (GMT -6)   
My daughter has taken her second infusion of the remicade and got really sick so they stopped it and gave phen. then started back slowly. She had second infusion on 5/1/07 then on that Thursday she fainted we rushed her to her ped doctor and they said she had influenza but no fever or any other symptoms of the flu so they put her on tamiflu. She also take sulfazalisin 1000x 2 daily. We have taken the 50mg of enbrel with no relief. so doctor suggested the remicade. since the infusion last week her stomach is killing her cramping and she feels sick on her stomach. I was just wondering if all this is normal with the remicade. Thanks in advance.

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Date Joined Mar 2005
Total Posts : 3148
   Posted 5/7/2007 8:33 PM (GMT -6)   
hi Buffy,
my sympathy & empathy for your daughter.
just to be sure...what is phen?  did you mean they gave her epinephrine?
an allergic reaction to Remicade can be successfuly stopped by giving Tylenol, Benydryl, and slowing down the IV. 
what exactly occured during that infusion?
was she pre-medicated? usually you are, with either Benedryl, tylenol, steroids or all 3.
it is a common occurence to have a drop in blood pressure (happened to me) (and still does) w/ Remicade.  this absolutely can cause fainting.
i take Remicade every 3 weeks and like clockwork...late that evening i'm on the toilet with violent diarrhea. and an overall feeling of "flu" that night and the week of the Remicade. and yes, nausea.
the intestinal cramps can be cause due to the increased vasculature to the bowels that the Remicade causes (which is a good thing)...it decreases inflammation in the intestines and therefor a lot more bloodflow gets through and can cause cramps, diarrhea, etc....
write back soon if you have any more questions or if i can help with any more concerns.
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Kidney Stones (oh joy). Previous Lymes Disease for 10 years.
Meds: Remicade infusions 600mg Q3weeks; Intra-articular knee injections; 6MP 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm; Diazepam 5mg; Rozerem 8mg; Diclofenac; Celebrex; Percogesic; Dilaudid 4mg. 

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Date Joined Nov 2003
Total Posts : 7314
   Posted 5/9/2007 10:38 PM (GMT -6)   
Buffy, There is a reaction called serum sickness that can occur in people who recieve Remicade. This occurs when the immune system reacts to the Murine protein causing inflammation. I think you need to discuss this with your daughters Doc. The reaction can be severe enough to warrant stopping the infusions.

Humira works quite similarly to Remicade, except it's protein is a synthetic human protein and so the risk of serum sickness drop way down. This might be an option for her and could be a little easier than the hours long Remicade. It would be a loading dose of up to 4 injections, but after that, it drops to one injection every one to two weeks, depending on the patient's response. I need it every week, but my AS is WAY out of control right now and I need the extra dose to get things settled.

I hope that you can find the best treatment for her and that she gets the kind of relief I am finally starting to see. Since going to weekly dosing just last week, I've been able to reduce my narcotic intake and it's amazing to be able to move. I even danced a polka at a party last Sunday! I haven't done that in years.
Keah a.k.a. Wormy
 God helps those who help themselves.
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