delayed allergic reaction to remicade

This is pretty much what my Daughter is experiencing also. She has been on Remicade for almost 5 years and double dose on and off for the past year. Her delayed reaction comes a little bit later than yours and I assume she is building up antibodies.

In doing some major reading/research of late because my Daughter's GI wants to try triple dose Remicade (which is pretty unheard of) to boost her response as he is not ready to switch her to Humira yet. I found that delayed reaction should be treated with 650-1,000mg Tylenol and/or 50mg Benedryl and if neither of them work a Medrol pack.

Yes, many patients move to Humira when Remicade isn't cutting it. Some patients do well with the switch but only 20%. Would be really hard to say if you would have a reaction to Humira. Humira doesn't have the mouse protein in it so many patients tolerate it better than Remicade.

Nikki, (also my Daughter's name)

My Daughter's GI is pretty certain that she is developing antibodies because of her almost 5 year use of Remicade. For some reason, and I guess because her GI is a pretty renown GI/Immunologist/Researcher/Educator out of New York Mt. Sinai he wants to try Triple Dose Remicade
to see what her health response would be. I was not thrilled hearing this on Monday, but trying to have faith that this top notch Person knows what the heck he is doing. I've spent hours reading a ton of his research work online and he is definitely "no schmuck". He claims he has current patients on triple and even quadruple doses of Remicade. Scary?? Without a doubt. I was scared when my Daughter first started single dose!! My Daughter is willing to be a guinea pig I guess. Hopefully, not at a great cost to health. First, she needs to find out if her Insurance will even pay for it. They have been paying for double dose, but they may not find Triple dose cost effective and recommend something cheaper, like Humira.

Her GI is not feeling the love of Humira for her yet. He seems to think it might not be the way to go with her and that it might not be effective, which I get, because as I said in other post only 20% of patients make a smooth transition from Remicade to Humira with good results.

Here is to hoping that you can find your "magic med" soon. Such a cr*ppy, frustrating disease IBD is!!

Oh man, this happened to me! In November, I starting having horrible joint pain, I have never had a joint pain in my life. I told my GI I thought it was the Remicade and he said no way, it would be an immediate reaction, no such thing as a reaction a week after infusion and to get my double dose again in 6 more weeks. Well, during that infusion, I was itching all over, they slowed it down and the itching stopped. Then I had SEVERE charley horse cramps in my calves for about 15 hours. A week later, I had joint pain in my wrists, fingers, knees, etc SO INTENSE. I took several different painkillers and no relief. I had to take Prednisone for a week. Again, GI said no it's not the Remicade, too late of a reaction, but you "might" be developing the antibodies... UGHH. I am trying Humira on Monday. I am scared. I think doctors need to learn that it IS possible to have a delayed reaction! I am disappointed to hear 15 or 20% of people do well on Humira after Remicade. :(

My reaction was not as severe as some of the people's who have replied, but I took Remicade for amost a year with no problems.  Then, I developed sudden severe joint pain 3 days after an infusion (usually felt the effects of the Remicade 3 days later).  In the next month or two, I started having allergic reactions to the Remicade.  Kept trying to premedicate, take the infusion over a longer period of time, move from home nurse to the hospital, etc., but never really could take it again without any problems.  Evidence of antibodies developed much earlier than all of this, which is when we increased from every 8 to every 6 weeks.  Now, I am participating in a clinical trial for Cimzia, which is similar to Humira.  I haven't had any reactions (other than injection site) yet and it's been a year.  My GI said that if Cimzia helped, Humira should also.  My only problem is that it now seems the drug isn't helping as much, so I may be building up antibodies to this one.  Humira will be the next one we try. 

princesscolon, I asked my doctor about the 15%-20% of people doing well with humira when they had a reaction to remicade. He said, while that was true, in the study they included people who didn't respond well to remicade symptomatically as well as those who reacted to the remicade. He said the percentage included a larger group than just those who reacted. Hopefully that makes you feel a little better!
Jenn4dex, I am in the same situation as you right now! After my reaction to the remicade my doctors wanted to put me on humira directly. I also decided to take a break until I can feel good about another decision. I've also altered my diet to cut out sugar and hard to digest carbohydrates. I've done well on this kind of diet before so I'm hoping it will work again. I feel good now, but I'm still on 15 mg of prednisone from the remicade reaction. Here's to hoping we'll do fine without humira!

Any allergic reaction mean that's your developing anti-bodies, which means the Rx won't work well! Get off it, it's not doing any good it the side effects are worse then Rx.

I think what I find most alarming, is the amount of reactions that are coming so late in treatment. When I had my reaction
it was on my 4th dose & went into anaphylaxis.

Now a year or so later, I'm injecting Humira, loading dose went well. but I'm now into my 7th dose, and I'm getting progressively
worse. The doc has told me only 2 more shots, as it's raising my liver enzymes & not working to reduce my symptoms..

I guess my fear is what is going to happen to us all in the long term. I know these drugs are a miracle cure for thousands,
but they are such toxic drugs... I sure hope it wont be like another thalidamide.....but in a different way!!!!

By the way Beachy -- My Allergist talked to Abbott who makes Humira. It stays in your body 10 - 20 days. My hives kept trying to break through the steroids because the Humira was still persisting in my body. The hives stopped growing on day 18! Stay on steriods until the Humira clears your system!

One more thing Beachy -- my allergist prescribed me Allegra in case I got itchy.  She said it works better tham benadryl and is non-drowsy -- but to also take the full course of steroids.  I never took the Allegra  so I don't know if it works.  Seems you took all my hivey itchiness because I had none!  Thank you for being so thoughtful! 

I am so sorry you are having such troubles!  Shame on your Dr for not wonderiing if Humira is time-released -- which it clearly is with dosing every 2 weeks!   All my Drs are with a good teaching hospital and I think this makes them a little more open to researching and new thinking -- and talking to other Drs.

I hope you feel better soon!

your story sounds just like mine! i had the same joint pain with Remicade. i was to the point of walking with a cane for 2 weeks after infusions. my last 2 infusions gave me hives. after the last infusion, the doctor decided to stop the remicade. i was on prednisone for 3 months to keep the hives away. it took about 4 months for the remicade to completley leave my body and be back to normal. my immune system has never been the same since. i get hives every time i run a fever and i get every cold/flu that walks by me. at the time Humira was not FDA approved so, being that i had tried every other drug out there, the doc decided to keep me drug free until i have problems. that was 4 years ago! she says that she want me to try Humira if i get a flare, but i've been extremely lucky so far. i think pregnancies and breastfeeding have kept off the crohn's for me.
good luck! keep us updated, i'm curious to know how you react to the Humira.
-jeny

Oh Beachy. After reading your post, now I feel itchy!!! I got hivey on the first Humira treatment. I am so glad my Dr. was cautious (because I had reacted to Remicade) and had me take only 1 pen. I can't imagine what would have happened if I had taken the typical 4 pen introduction!! Yowza!!

What day is this for you from the last Humira?

I do well on the Remicaide but the Humira gave me hives all over my face that lasted for weeks.  They would not last all day but for an hour or 2 every day.  Until the medicine got out of my system.  I did notice that the back of my head itches, it was not itching the whole time I was off the Remicaide and now taht I am back on it is itching again.