Delayed Infliximab (Remicade) Reaction

[xSophiexx]

Hi there belly buddies hope you're all well =)

So... 16days post infusion (4th one) big red blotchy rash on face. Happened before after last infusion but cant remember how long after. Very itchy, very red, very hot.

Saw my gp today he has said its either viral parvo (known as slapped cheek in kids) pox of some kind (unlikely in my opinion) or drug induced allergic reaction.

Tried to contact GI secretary but alas... as per usual NO BLOODY RESPONSE.

Slightly at the end of my tether with all my odd reactions to drugs and bemused if it IS the infliximab so late on.

Should also mention current Staph infection but previous rash was before i got this.

Anyone got any advice.. experience or comment?! All welcome and appreciated as ever.

Soph xx

 

[sickinlk]

heres some info form Web MD

A very serious allergic reaction to this drug is rare. However, get medical help right away if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing, difficulty swallowing.

however it seems its just a rash and you didn't mention feeling unwell or anything, so it seems harmless. best getting it checked out.
lupus sprung to mind when I first read it but I would think the rash would hang around.
sorry im not much help.
ju

 

[Martha]

I got some bad reactions to infliximab after 4 lots it was stopped, thankfully at that time it was enough to give me some life back. It hit my nervous system so locked joints and no real strength in my legs. All mostly back to normal, but I do on occasion still get the locked hand which can be very painful. I wouldnt spend too much time speaking to your GP go direct to your consultant. I find it shocking how some areas of the UK are different to others I just thought your IBD nurse had to call you back, but a few people on here say they dont get a call back....good luck

 

[glum chump]

I had the same experience as Martha...it would start in my jaw. The first time, I couldn't open my mouth (thought I needed a root canal, or something), and then my knee and shoulder joints locked. Initially, I didn't think of Remicade because it happened about 10 days after my infusion, but my GP and GI confirmed that Remicade was likely the culprit.

On the FDA website (US), the warning label for Remicade does talk about 'Delayed Reaction' so it's a real thing!

I was desperate, so ended up doing one more infusion of Remicade. But my GI had me take Tylenol an hour before my infusion, and an antihistamine (Benadryl). He also ordered a steroid and more Benadryl through IV just prior to starting my infusion to try to minimize the side effects.

Have you been using any antihistamines?

I hope you're able to get a hold of your GI soon...in the meantime, maybe trying some over-the-counter allergy medication to see if that helps? I would definitely be talking to your GI at some point before your next infusion.

Good luck...and hope you feel better soon.

Kismet

 

[xSophiexx]

oh dear Martha and glum chump that sounds awful and i havent had locked joints just a bit coughy and scratchy throat. ive taken prescription strong anti histamines. and ny nurse isn't a proper ibd nurse she just carries out some ibd functions i.e scopes infusions etc. heard back from GI who said monitor situation.

unfortunately i havent had any improvement from infliximab yet a.d it feels like when it rains it pours i now have lrq pain that feels different to normal its been constant all day gnawing pressure type pain ughhhh