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Remicade: Newbie very nerveous

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Crohn's Disease
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Posted 9/4/2007 4:26 PM (GMT -6)
Hi All fellow Remicade users:

I did my first treatment last Tuesday.  I had two pretty good days on Sunday and Monday and today is terrible -- lots of pain.  Has anyone had experiences like this -- it starts working and then gets really bad.  I am freaking out.

Please help.

Posted 9/4/2007 4:54 PM (GMT -6)
Hi Laurie,
It should take up to 3 Remicade infusions for you to feel better. I am on Remicade for over 2 years
and I love this drug. Its kept me inremission. Don't freak out you will be ok. I am sending you Big Hugs.

teddybear
Posted 9/4/2007 5:15 PM (GMT -6)

Thank you Teddybear.  I could cry because of your response. I was losing hope.

Hugs to you.

Posted 9/4/2007 5:59 PM (GMT -6)
Hi-I have bad joint pain from remicade. I take benydryl for a few nights after my infusions. I am only going for my 4th infusion in 2 weeks, but I have not seen results yet. I got an abscess after the 2nd infusion and another fistula after the 3rd but no change since the 3rd infusion.....People keep telling me not to give up yet so I'll say the same to you! :-)

Best of luck!

ginger

Posted 9/4/2007 6:21 PM (GMT -6)
Hi Laurie -
After my 1st infusion I had bad joint pain - and from my understanding sometimes the side effects don't appear until after 3-12 days, so hang in there.

I have my 3rd infusion on Thursday but I have been feeling so much better over the past few weeks than I have in the last year, so it has been working for me. Like teddybear - I am LOVING remicade!!!

So there is hope, so don't freak out - also there are a few "newbies" to remicade so you have plenty of support.

Hope the pain passes soon!
Posted 9/4/2007 9:12 PM (GMT -6)
I have been on Remicade for 4 years without having any major problems. Sometimes people can tolerate it for a long time and sometimes it is very short lived. I hope you find that it gives you the relief it has given me.
Posted 9/4/2007 10:10 PM (GMT -6)
TBW is right Laurie. It does take a while to work well and you may just have symptoms from the crohns itself. Hopefully you are on something to help your body , not , build antibodies to the mouse proteins in the remicade. If so you will be able to take it longer . Hang in there...
Posted 9/5/2007 4:44 AM (GMT -6)
Hi Laurie I am taking Imurun with mine and now 10 mgs of pred. It wil take a little time to get things better but hang in there .I get some body aches and take tylenol when neeeded you will probably get better results after a few more treatments. lol gail
Posted 9/5/2007 5:35 AM (GMT -6)
Sniper,
I'm glad you brought up antibodies. I was on Remicade for 3 years and had excellent results - complete remission. Unfortunately, my doctor did not prescribe any other medication to take with it, so I developed antibodies, and it stopped working. sad I wish I would have known about antibodies at the time, because I would have brought it to my doctor's attention.

Hang in there, Laurie. Your colon just needs some time to heal.
Cecilia
Posted 9/5/2007 6:58 AM (GMT -6)
Hang in there everyone. I have been on Remicade for a long time. It takes some time to kick in. It has helped me so much. Good Luck to everyone.

Posted 9/5/2007 10:09 AM (GMT -6)
I hated it the first time.  Hang in there, it should definitely get better.  I was very sick after the first infusion, the joint pain was really bad and very bad stomach pains.  Good luck.
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