Remicade: Newbie very nerveous

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Laurie G
New Member

Date Joined Jul 2007
Total Posts : 11
   Posted 9/4/2007 5:26 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.

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 9/4/2007 5:54 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.

Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007

Laurie G
New Member

Date Joined Jul 2007
Total Posts : 11
   Posted 9/4/2007 6:15 PM (GMT -6)   

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

Hugs to you.

Veteran Member

Date Joined Nov 2005
Total Posts : 722
   Posted 9/4/2007 6:59 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!
36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)

Regular Member

Date Joined Dec 2006
Total Posts : 244
   Posted 9/4/2007 7:21 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!

MMAC, Wife & Mother of 3 (14, 13 & 7) - Diagnosed w/CD June05 (terminal ileum)

Asacol (9 daily), Imuran (150mg), Prenisone (15mg), Cipro (1000mg)Lunesta (3mg), Phenergan (when needed) - Remicade as of 7/24

Veteran Member

Date Joined Apr 2004
Total Posts : 2284
   Posted 9/4/2007 10:12 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.
We can respond to irritation with a smile instead of scowl, or by giving warm praise instead of icy indifference. By our being understanding instead of abrupt, others, in turn, may decide to hold on a little longer rather than to give way. Love, patience, and meekness can be just as contagious as rudeness and crudeness.


Please allow HealingWell to continue helping others by donating:

Dx'd with Crohn's at age 12. Symptoms since age 5.

Learning to live with this Disease rather than be its victim after 42 years.

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 9/4/2007 11:10 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...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 9/5/2007 5:44 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

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 9/5/2007 6:35 AM (GMT -6)   
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.

Veteran Member

Date Joined Feb 2003
Total Posts : 1432
   Posted 9/5/2007 7:58 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.

Crohns Disease-Remicade since 1999, Methotrexate
Fibromyalgia & Arthritis
Bipolar & Panic/Anxiety-Trileptal, Xanax, Trazadone, Wellbutrin

Regular Member

Date Joined Mar 2006
Total Posts : 494
   Posted 9/5/2007 11:09 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.
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Entocort, Prograf and Remicade.

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