remicade question

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Regular Member

Date Joined Mar 2008
Total Posts : 68
   Posted 3/15/2008 5:43 PM (GMT -6)   
Hi!  I'm new to this board. I am a 30 year old female who  was diagnosed with UC in 1999.  I have tried pretty much all medications with no real relief!  My Dr wants to start me on Remicade and I am hoping that will finally put me into remission for longer than a few months.  My question is what should I expect as side effects of the infusions?  Does it cause weight gain? (superficial, I know) But I don't want to start anything that will make me pack on the pounds.  I am at a healthy weight and I would like to stay there.  Usually with a bad flare I lose a few pounds, then gain it back, so that's no problem.  Sorry if my question seems silly to anyone, but I was really wondering about the different side effects.

Veteran Member

Date Joined Jan 2006
Total Posts : 616
   Posted 3/15/2008 6:42 PM (GMT -6)   
I haven't had any side effects from the infusions, nor have I had unreasonable weight gain. I finally weigh what I weighed before getting sick :) and I've been on it for about a year and a half now.
Asacol 4 tabs 2x daily
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
12th Remicade infusion End of March

Veteran Member

Date Joined May 2006
Total Posts : 619
   Posted 3/15/2008 6:44 PM (GMT -6)   
I've been having god luck with Remicade. I am now on a six week schedule between infusions and am finally succeeding in my Prednisone taper. I have experienced no side effects. Any weight gain I am putting down to the Prednisone and hope it will come off once I have that out of my system. Been on it going on two years now.

The main thing to watch for is getting an infection. Be sure to wash your hands frequently, keep wounds clean & covered, and avoid large crowds when possible.

The infusion process itself is almost pleasurable. You go to an infusion clinic or perhaps your doctor's office. You sit in a very comfortable recliner and the nurses are expert at inserting the IV needle and getting you set up. Half the time they are so good I barely feel the needle go in. You'll sit for 2 1/2 to 3 hours as the the Remicade is given to you through a drip. Your temp and blood pressure will be monitored. If necessary you may be given IV Benedryl. The first time you go yo may want to make sure you have an option if you find you are too tired to drive, but that's never been a problem for me.

Bring a book or an iPod or other MP3 player to keep yourself entertained for the time; several times I just fell asleep and napped the infusion away.

It's been a real help for me, just prior to the holidays I was feeling like I would have to have my colon removed, but a more frequent infusion scheudle and taking Culturelle seems to be doing the trick.

Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, tapering attempt, down to 10 mg. Daily supplements: multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums
12/1 - 12/29/07 weekly Venofer (iron) injections; <S>9 mg Entocourt EC</S>; Xanax as needed; Lexipro 10 mg, <S>Rowesa;</S> <S>Asacol; Colazal</S>; Bad reactions: Imuran (2/07)

Forum Moderator

Date Joined Mar 2003
Total Posts : 10407
   Posted 3/15/2008 6:50 PM (GMT -6)   
I've also had great success with Remicade. It allowed me to get off steroids and put me in remission for the past two years. As far as side effects, the only thing Ive noticed is that I'm a little tired after my infusion; in fact, I often take a little nap in the infusion center.

You'll most likely be asked to get a TB skin test before starting, because in people with inactive tuberculosis, it can re-activate the disease. Also it does lower your immunity, although I haven't really noticed this in myself. I've had one cold since starting it, one dental infection (I have bone loss in my jaws due to steroids) and that's it.

I hope is works as well for you. And welcome to the HealingWell family.
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
Co-Moderator UC Forum

Regular Member

Date Joined Mar 2008
Total Posts : 68
   Posted 3/15/2008 7:28 PM (GMT -6)   
Thank you all for your quick replies. I see my Dr on Wednesday, and I am a little excited to start Remicade! That may sound weird, but for the past, almost 10 years I have only been in remission for a few months at a time!
My Dr gave me the TB test at my last appt when we talked about the Remicade, so that is clear, but I will make sure to avoid all people with infections. That may be hard though because I have 2 kids (7 yrs and 18 months) They don't get sick too often though. I'll just have to wash my hands extra often!

Regular Member

Date Joined Dec 2007
Total Posts : 151
   Posted Yesterday 4:26 PM (GMT -6)   
Hello,  I have been on remicade now since my hospitalization in Nov.  I have had great results.   For one thing,  I have been flare free since starting it.   I was in the process of considering surgery,  but now have determined that the remicade has been so helpful,  we are putting hold on those surgery plans.   yay!  Also,  have no real bad side effects,.  I have some joint aches and fatigue,  but that has always been there,  and I attribute it now to just the disease itself and perhaps age.   I am ok with living with it as long as the bowel symptoms are in check.    I have even encountered a few gastroenteritis symptoms (the stomach bug), and in the past any stomach bugs would cause me to go straight into a flare,  but now since remicade, once the bug worked its way out,  I was "normal" again.   I was on high steroids in the hospital and had all the bad side effects especially the moon face!    And now no moon face,  and no extra weight gain.   Even been working out again and losing weight.  I agree with the others at having a pleasurable time with getting the infusions.  for whatever reason, I always to get a bit nervous before an infustion,  but once I'm there it is quite relaxing to lay there and be waited upon, and take a nap,  watch tv,  listen to mp3 player or read.       Its the time I can relax without feeling guilty like I should be doing something else.   Good luck on receiving your first remicade!!  I highly recommend it!   :o) 
41 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).   Diagnosed L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05.
Remicade infusions ~ 11/6/07, 12/6/07, 12/20/07, 2/14/08,  6-MP 100mg daily, Pentasa 500mg twice a day, prednisone 20mg 10mg 5mg daily, Nexium 40mg twice a day, Lantus insulin 45 35 25 20 units daily, Novolog 10 8 5 units with sliding scale at meals, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily,  and pro-biotics daily.

Veteran Member

Date Joined Nov 2005
Total Posts : 675
   Posted Yesterday 4:47 PM (GMT -6)   
I have been on Remicade infusions for over 2 1/2 years and it has put me into a remission that I have been able to sustain. I only have a few side effects (mostly sinus issues and chronic cough), but no injection site side effects. When I was administered a steroid prior to my infusion I would get terrible headaches for about 36 hours after my treatments. I no longer take the steroid as part of my infusion (and no longer have the awful headaches)- just Clariten and Benedryl in my solution before the Remicade is added. I have gained weight and am at a healthy weight for my age/height now. I attribute my weight gain to a better balanced diet and regular meals (no more skipping meals because I feel awful). Remicade was a win/win situation for me and I hope you have great results as well. Good Luck!
pancolitis. Osteopenia. multi-vitamin, calcium, omeprazole, benefiber, boniva, align.  Remicade since Dec. 2005.
"The secret to my own happiness, my own good future, is within my own hands, I must not miss that opportunity"

Regular Member

Date Joined Feb 2007
Total Posts : 159
   Posted Yesterday 5:06 PM (GMT -6)   
Just in case you need one more afirming voice. I went on Remicade as a last ditch effort before having surgery. I started treatments last January after being in a severe flare for over a year. It took about 4 to 6 six weeks before I started seeing real results, but I have not had a flare since I started the treatment and I only ocassinally use canassa supositories between treaments and I still have my colon and have not experienced any side effects.

meds: UC diagnosed 1990; Remicade - 1 year, Canasa suppositories as needed, vitamins and other supplements
Severe reaction to 6MP; Severe nausea and steady unwanted weight loss on Asacol

Veteran Member

Date Joined Feb 2005
Total Posts : 6447
   Posted Today 8:03 AM (GMT -6)   
Just another reaffirmation -- Remi has been wonderful for me, and I've been on it for almost three years (in May!) and have not had any side effects. I too had the moon face and gained 20 pounds from the pred. I'm happy to say that I lost those pounds and the moon face and feel better than ever. Almost immediately after starting the Remi I was able to maintain a regular workout schedule. Good luck with the infusion -- after my last infusion, I actually posted about how much I look forward to my infusion as it gives me some good energy and also I don't mind the pampering and good friends I've made. Let us know how it goes, okay? :-) Oh, and one more thing.....welcome to HealingWell! :-) Glad to have you aboard.


Remicade - will have my 21th infusion on April 17.
Vitamin B-12/Biotin, Probiotics
Co-Moderator for the UC Forum

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