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New Member

Date Joined Dec 2008
Total Posts : 3
   Posted 12/29/2008 8:38 PM (GMT -7)   
Dear All,
Hope this message finds you all well and have had a good Christmas.
I am 27 and was diagnosed with Crohns Disease 8 years ago.
I'm not the greatest patient ever but my docs have pursuaded me to try Infliximab/Remicade as a last resort in a bid to get me some what better. I also have a fistula.
I do have some info on this new drug but would like to hear from other sufferers who have tried this type of drug and the side effects and responces it has made upon yourselfs.
PLEASE respond if you can as treatment might be starting in early Jan and to be honest from what i've read so far it is scaring the wits out of me.
Thank you very much for taking the time to read this and I look forward to your responce.

Veteran Member

Date Joined Nov 2005
Total Posts : 1340
   Posted 12/29/2008 8:40 PM (GMT -7)   
Welcome. I haven't taken remicade but many, many people here have and do. Try to do a search through older posts and you'll find a lot of information.
Hoping to stay in remission after the birth of a healthy baby girl. On Pentasa during my pregnancy, went med-free 2 months to nurse (stupid), but back on Pentasa and still nursing.

New Member

Date Joined Dec 2008
Total Posts : 3
   Posted 12/29/2008 8:43 PM (GMT -7)   
Thank you very much for reply.
Congratulations on the birth of your daughter and i hope you have many months of remission.


not creative
Regular Member

Date Joined Mar 2007
Total Posts : 469
   Posted 12/29/2008 9:31 PM (GMT -7)   

I decided to try Remicade when Humira didn't work for me. Around the beginning of October I went for my first infusion. I had no problems with it save for being tired the next day, in fact, I was already starting to feel better by the next day. I had another infusion that went great and I quickly began to feel fabulous.

Unfortunately, I had a terrible allergic reaction about 20 minutes into my third infusion. Within about 5 minutes, I went from feeling flushed to my blood pressure sky rocketing as my pulse raced and my chest tightened, I couldn't breathe like an elephant was sitting on my chest. Once I convinced one of my infusion neighbors that I was having issues and he yelled for help for me, the nurses came running and gave me a crapload of anti-dying goodness and about 20 minutes later I was better. They immediately stopped my infusion and put me on an open saline drip. I slept there for a few hours until they decided I could leave.

I'm sorry for such a scary story when you're already nervous, but I was terrified- I literally had the "this is what it feels like to die" thought. The worst part is that I hadn't felt so good in almost a year, but both my GI and my GP recommended I stop.

Now, I'm trying low dose naltrexone- hoping that boosting the immune system will work better than killing it did. If you have any other questions, let me know.

And remember, this is just my story, Remicade has given many people their lives back and has that same potential for you.
Laurenne, 24 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002
On: Started LDN about a month ago, Zoloft, Lialda and Imodium

Veteran Member

Date Joined Oct 2005
Total Posts : 1250
   Posted 12/30/2008 2:49 AM (GMT -7)   
Chantal, welcome to Healing well! There is a thread regarding meds that you will find very helpful. I have been on Remicade for 2 1/2 years, and it has been a miracle drug for me. Laurenne had posted to you that she had a reaction. That does happen to some people. Usually they will pre-medicate you with certain drugs such as Tylenol, Benadryl, or IV Prednisone to help prevent a reaction. I have never had a reaction to Remicade. I receive Tylenol and IV Decadron (a steroid) 1 hour prior to my infusion. The only side-effects I experience is fatigue/headache for the next day. Otherwise, nothing. The best of luck to you! Blessings, Julie
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax,  Prevacid 30mg, Vit B12, Vitamin D, Slow-FE (Iron), Hydrocortisone enemas
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 12/30/2008 9:06 AM (GMT -7)   
I do not take Remicade, but many on this board have had great success with it. Give it a try, you could get on the road to good health. Good luck!
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.

Regular Member

Date Joined Jul 2008
Total Posts : 57
   Posted 12/30/2008 10:10 AM (GMT -7)   
I have been taking remicade for about 6 months & it has been a complete wonder drug for me. The only side effects i have had is weight gain - but nothing extreme.
It put me into complete remission almost immediately.
i was definitely apprehensive about it at first but i am so happy i am on it now.
I am def lucky & there are others who havent responded as well, but there are many people who do really well on this drug
Good Luck!

Regular Member

Date Joined Nov 2007
Total Posts : 497
   Posted 12/30/2008 1:53 PM (GMT -7)   
I started Remicade in November (I have just had two of the first three loading doses) and after the first dose, I felt better, but after the second I REALLY felt better. My third dose is in a week and right now I have a horrible head cold which I am hoping is gone so I can have my 3rd infusion next week.

I was scared senseless to get started on it, but I am so glad I did. I have had more energy, more desire to do things and a lot less pain. I feel like I have gotten my "life" back, if that makes sense.

The only side effect I have noticed is I did get a headache the day after I had my last infusion. They have not pre-medicated me, and maybe that is because I am still on pred but trying to get off.

If you haven't already, you can go to and request to have information sent out to you. I did that and they sent me a booklet along with a DVD about Remicade and Crohn's.

Best of luck to you and I sincerely hope Remicade helps you!

Regular Member

Date Joined Apr 2008
Total Posts : 60
   Posted 12/30/2008 2:12 PM (GMT -7)   

I started Remicade last April.  I was very scared.  I haven't had any side effects and am doing SO much better.  I feel better with every treatment.  I wish I would have started it to begin with.  I actually just had an infusion this morning.  My doc is very impressed with my progress and said how much he loves Remicade because it gives people their lives back.  It really does!

Good luck!

Regular Member

Date Joined Nov 2003
Total Posts : 134
   Posted 12/30/2008 2:26 PM (GMT -7)   
Hi Chantal,

I was on Remicade for over 2 years. I wasn't premedicated during any of those, and I had gotten up to the maximum dose every 4 weeks. The only reaction I had was fatigue the first few times and an itchy rash. I had developed antibodies to the Remicade, which is why I finally had to come off it. I was also on Imuran and then Methotrexate during that time. It really helped my arthritis and did some good for my Chron's when it was working.

Good luck to you,

New Member

Date Joined Dec 2008
Total Posts : 3
   Posted 12/30/2008 4:29 PM (GMT -7)   
Just to say thank you all very very much for your lovely replies following my aprehension of Remicide/Infliximab as it is called in England, where i'm from.
I've had some good and not so good feed backs but am still a little confused as what to do.

Happy New Year to you all

Chantal x

Regular Member

Date Joined Jul 2009
Total Posts : 25
   Posted 7/24/2009 2:21 PM (GMT -7)   
Any one experienced a manic reaction on remicade with lots of tears and muslce twitching, felt very tired initially with concrete arms and legs but the tiredness and heavy limbs went. still struggling with the rest

Regular Member

Date Joined Jul 2009
Total Posts : 37
   Posted 7/24/2009 9:56 PM (GMT -7)   
I've had 10+ remi infusions since starting early 09. No bad reactions except the first time I got a fever, just sitting there for hours at a time with a needle in your arm. My advice is to buy a PSP or something for entertainment or just stay up late and sleep thru it, thats usually what I do. The PSP has served me well though movies, music and games FTW!!

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