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Just another remicade question...

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Crohn's Disease
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Posted 8/8/2011 1:58 PM (GMT 0)
Hello all!!  I am not really a new member, I just forgot the email I used with my original healingwell account and have had to make a new one.  I have looked over all the Remicade rash discussions in the search and no one had asked a question about this particular thing.  I just started Remicade on the 29th of last month.  This past Saturday, I noticed I was developing a rash on my chest.  By Sunday morning I was covered from head to toe in a horrible red rash.  Went to the ER by doctor's recommendation and the ER doc said that it looked like a medicine reaction, but she wasn't sure because she's not familiar with Remicade.  I'm on prednisone and benadryl to try and get the rash to go away, especially since my 2nd dose is this friday!

Now, it doesn't hurt me, just itches every now and then and makes my skin feel crawly.  When I say all over my body, I literally mean all over my body.  I see my Gastro on Thurs. to see what the verdict is.  My question is has anyone ever experienced this before?  If this was your only side effect, did they discontinue the medication or did they give it another go?  I really want to give Remicade an honest try.

Posted 8/8/2011 2:16 PM (GMT 0)
I do not have experience with Remicade, but I do think I have seen some folks have a rash they suspect from Remicade. If I am not mistaken Talkira is the one who has had this happen. Hopefully she will be along soon. Hugs!

PS I think some were allergic to the mouse protiens in it, and had to switch to Humira.
Posted 8/8/2011 4:33 PM (GMT 0)
Eek! I really hope I'm not allergic to mouse protiens, but if I am remicade was my first of the last drugs that may/may not work for me. I don't mind if I have to switch to Humira, but it took a lot just to get on Remicade heh. I have never had a reaction like this in all my life so it's something I'm not used to. I just hope it's not considered a serious one. I hate the way this DD works. I am running out of medications I haven't tried to get this disease under control and Remicade/Humira were my last resorts.
Posted 8/8/2011 4:37 PM (GMT 0)
oh man did i have one hell of a rash on my fash.....so far so good after getting roids and benedryl with the infusion ..
Posted 8/8/2011 4:41 PM (GMT 0)
Hey takilra! I'm glad you posted :). Did the rash happen immediantely or was it several days after the infusion? This started eight days after mine. Also, did it cover your whole body or just your face? I'm walking around scaring my kids I'm so covered. haha While waiting on my steriod prescription yesterday I tried to hold my son's hand and he pulled away saying he didn't wanna catch what I had! I had to explain to him that the rash all over my body wasn't going to get him sick! It was embarassing/cute.
Posted 8/8/2011 4:56 PM (GMT 0)
it was like a month after. Just my face and one spot on my chest.. awww kids are cute and silly at the same time.
Posted 8/8/2011 4:57 PM (GMT 0)
dr didn't think it was caused by the remicaide but just making it angry..soo hopefully( so far so good) it seems to be calm.. She also told me to try to stay out of the sunn as much as i can.( which bites cause i was a sun bunny)
Posted 8/11/2011 6:49 PM (GMT 0)
Just wanted to update.  I saw my gastro today and he confirmed that my full body rash (and then complete and total crazy ache of different lymph node areas!!!) was indeed a delayed remicade reaction.  I will not be going to get my second dose of remicade tomorrow.  I guess that miracle drug wasn't made for me, heh. 

So thank you guys for answering my post, and if you don't mind answering a question, when you hit a snag like this did something else work for you?  I have to do a month of prednisone followed by another appointment.  Benadryl to be continued every four to six hours as long as the rash is still around.  Then we will talk about what is next.  Remicade was the first of the on the market "higher tiered" drugs that I started.  I did well on abt874 before they pulled it, so I've had infusions before but it was a different formula.  I suppose Humira might work better?  Any thoughts or experiences in this?  Thanks again ya'll :)

Posted 8/12/2011 1:00 AM (GMT 0)
My husband had an allergic reaction to remicade as well and created antibodies against the mouse protein. So after a year in remicade (it didnt do much for his CD) he switched to Humira. He was on Humira for about 2 months and wasn't seeing the improvement as much so just started 6mp in conjunction with Humira about two weeks ago. And major improvements!! This week he went over 8 hrs without BM and D! Which is huge for him! Also slept through the night and overall just a different person! We also changed our diet to no wheat, gluten free, dairy free and minimal sugar. Has been good so far...fingers crossed! Good luck..there will be a med combination that will work for you.
Posted 8/16/2011 9:06 PM (GMT 0)
Hi, jambalam

do some research on Low Dose Naltrexone. There are plenty information online. a doctor at Penn state medical center has done study for this med. and crohn's. Look into it and see if it is helpful in your case. 

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