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Problems with Remicade

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Crohn's Disease
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Posted 3/3/2008 3:13 PM (GMT 0)
I was just wondering, those of you who have had problems with taking Remicade what kind of problems have they been?

My 17 yr old daughter had her 2nd infusion last Tuesday.  She had the first one 2 weeks before in the hospital.  She has felt worse ever since starting it. Stomach Pain/Nausea etc.  I dont know if I want to continue or not.

Robin

Posted 3/3/2008 10:57 PM (GMT 0)
Robin,
Often people starting Remicade do not see great improvement in GI symptoms until after the 3rd infusion. I know I had a little improvement right after the second infusion and then BAM! the symptoms came back with avengence. That said....

Has your duaghter reported these NEW symptoms to her GI? Does she have a history of prior stomach or reflux issues? Nausea and vomiting are both common side effects of Remicade. I think it's time to get her into the GI to be seen prior to next infusion so a decision can be made.
Posted 3/4/2008 2:53 AM (GMT 0)
I would call your doc so he's aware of what's going on. Maybe she need some blood work done. Good luck.
Posted 3/4/2008 3:38 AM (GMT 0)
ask for the promethis test....it lets you know if you have built up antibodies to the Remicade. I did within 3 infusiions....showed no Remicade even registering in my system even 2 weeks after the last infusion.  Might want to check with insurance about cost and coverage tho.....mine ran $300, but BC/BS covered all but 20% due to it being "a medical necessity".....due to my reactions on the second infusion.
Posted 3/4/2008 10:38 AM (GMT 0)
Hi I had the Promethis test done before I started Remicade. Does your daughter take pre-meds before the infusion? I have been on Remicade for almost 5 years with no-side effects
Posted 3/4/2008 2:13 PM (GMT 0)

Hi.  Thanks everyone for your replies.  I am in constant contact with her doctor per their request.  They give her Benadryl and Tylenol before her infusion.  Also, she has been on Pred. since the first of Jan. and the doctor said that would also help in not having a reaction.

I have read that stomach pain is a common side effect of the Remicade but the doctor said that it should not be ongoing.  It has been since last Wed. evening.  It appears to be worse in the a.m.  The nausea has just started the past couple of days.  The dr called her in a prescription for an antispasmodic that she started on Sat.  I wonder if that is also making her have an upset stomach??

The doctor wants to do a colonoscopy next week to take a look.  She hasn't had one since last April.

Any comments are greatly appreciated.

Robin,

Mother of Brittany 17, dx Crohns/Colitis 2003

Currently taking:  Remicade (2 infusions), Fish Oil, Nexium, Allegra, Antispasmodic, Predisone 30M.

Tried and didn't work:  6MP, Rowasa Enamas

Posted 3/4/2008 3:40 PM (GMT 0)
I don't know if this will help, but I'll tell you about what has worked for me:

I was having "stomach" pain that went away when I took an antispasmodic (levsin). What I mean is, when the pain came, I put the pill under my tongue and the pain went away. I kept having this kind of episode until we got my CD under control. This may or may not be what your daughter is experiencing. (This drug did not upset my stomach, but it may be a side effect for some people, I don't know.)

Nausea is a catch-22. I would be nausiated and didn't want to eat, but if I didn't eat, my nausea would continue. Try some peppermint tea, sprite, and the other usual things to try to keep the nausea at bay. Try to keep her eating what she can.

I would also encourage another scope. The prep is horrible, but the more info the dr. has to work with, the better chance he has to treat successfully.

Does your daughter go online for support/education? There is a new site for teens/tweens that she may be interested in: http://www.ucandcrohns.org/#active

Good luck finding answers. Also, go to ccfa.org and find a chapter near you. They have great fundraising events, support groups, and educational symposiums.
Posted 3/4/2008 4:25 PM (GMT 0)
I think the Levsin is what she has.  I do not have it with me here at work but that sounds right.  Why do you put it under your tongue?  Her instructions just say to take every 4 hours as needed.

She is scheduled for a scope next Tuesday.  Hopefully we can get some answers.

I am also wondering if some of the pain is coming from worrying about school??  She has never worried about this before but she did mention the other day that she hates to have to go to the bathroom at school because it is frequent and it takes her about 15 minutes every time. She called this a.m. from school in a lot of pain and I told her to sit in the office and try to wait it out.  They ended up dismissing school because of flooding and I talked to her on her way home and she felt much better. Her stomach pains and nausea seems alot worse in the a.m.

Robin

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