Rash 3 weeks post remicade

[Sonnyboy66]

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?

 

[crohnsinct]

Beware of online research!:hallo3:

But the same thing would be lurking in the back of my mind. Did the GI see the rash? Can you get a picture of it to send to them? The good news is that Remicade induced Lupus is an easy fix...stop Remicade.

Try not to cross bridges before you come to them and when you figure out how to do that write a book because you will be millionaire!

Good luck! I hope the rash is just one of the many weird anti tnf or Crohn's skin issues and that his joints clear with the recent illness!

 

[Sonnyboy66]

Thanks.

We did send him the photos and that is when he mentioned the rheumatologist.

Trying not to do so much research but it is hard.

Thanks,

 

[my little penguin]

Hugs
Remicade caused a host of skin issues for Ds
It can cause psoriasis
Ezcema
Atopic dermitis
And of course drug induced lupus

Joints could e from crohn
Arthritis
Or anything else

So i know it's hard. But it can be something minor

Hugs

 

[JaimeM]

I had a lot of joint pain from the remicade. never had a rash or anything thankfully.. Hopefully its not the remicade and just a weird rash

 

[ronroush7]

I had folliculitis from Remicade.

 

[Bufford]

I got the butterfly rash as its sometimes called after the 3rd infusion, and the bleeding fistula returned. The side effects include severe abdominal pain, headaches and feeling weak. Going off Remi and looking for an alternative form of treatment.

 

[malorymug]

My boy had some joint pain after the first few Remicade infusions....and some acne on his face, now that I think back. Both were short lived and about the 5th or 6th infusion, those side effects went away.

I sure hope it is the same with your son and that the symptoms will soon subside.

 

[Sonnyboy66]

Thanks everyone.

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.

 

[Sonnyboy66]

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.

 

[Mehita]

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.

That's interesting. Our GI wants to see DS' levels between 5-10.

Good luck. Update us when you know the results.

 

[crohnsinct]

Mehita: I think the difference may be because they are testing at 4 weeks so levels will need to be higher to leave him at 5-10 at weeks 6,7 or 8.

 

[Sascot]

Hope he's not developing antibodies. With any luck the Benadryl, etc will do the trick

 

[my little penguin]

Mehita the higher the remicade level the less likely reactions will occurring
Above 20 is cited in more than one study

 

[my little penguin]

http://m.gut.bmj.com/content/early/2014/10/21/gutjnl-2014-307883.full

 

[Sonnyboy66]

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.

 

[ronroush7]

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.

That is great. Praise God.