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Rash 3 weeks post remicade

Hello,
My son has undergone his 3rd infusion of remicade nearly 4 weeks ago. Just before his 2nd infusion and now 3 weeks after his 3rd infusion he has developed a slight rash on the sides of his nose. Then it goes away in a week. This weekend he developed a cold and his knees and elbows began aching.

We alerted his GI would wants to wait till next week to see what happens with the joints and rash after the cold goes away. If it persists he wants us to see a rheumatologist.

We are concerned that he suspects lupus after doing some research on-line.

Should we be concerned?
 
I think it is a possibility. I believe there are other posts in here concerning the matter. I wish you the best. Let us know the outcome. As the saying goes don't count your eggs before they are hatched or something similar.
 

fuzzy butterfly

Well-known member
Hi I suggest that you keep a note of any symptoms your son has and when they occur and show them to your doctor, so he has the full picture on what is happening and when. That may help him know what to do next.
Best wishes 💕
 
Thanks everyone.

We keep the doctor advised of all symptoms and when they occur.

We are seeing the GI doctor on Monday and getting blood test then to see how much remicade remains in his system 4 weeks post infusion.

I will let you all know.

Thanks again.
 
Back from the GI. He does not believe the rash and aches in his elbows and knees are lupus. Rather it may show that my son's body is developing anti-bodies to the remicade. He is now having a blood drawn to see what his remicade levels are and to look for the presence of anti-bodies.

GI wants to see remicade levels of 20 or higher and if that is the case MTX will be added and pre-medication on infusion dates, which will include a steroid and Benadryl. The test takes a week to come back.

So we will see what happens next.
 

fuzzy butterfly

Well-known member
Hi glad its not looking like lupus. Hope things go well with the bloods n your son can get the right meds to help him feel better. Best wishes 💕
 
Great news from the GI. Our son's remicade level was 57 and no signs of antibodies. Thank God. Holding off on methotrexate for now and will re-do the tests at next infusion in the beginning of April.

Thanks for all the support.
 
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