Who knows the side effects of remicade?

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New Member

Date Joined Dec 2007
Total Posts : 13
   Posted 12/7/2007 1:13 PM (GMT -7)   
Hi, I have been on 6mp from july until last week, doctor took me off due to headaches and nausea.  He is going to start me on remicade, who can tell me the pros and cons of this therapy?  I took up jogging in july and have ran two 5k's so far but haven't ran in a month due to the headaches, I really miss it and hope to start up again especially in the spring.  I need to know how people feel when they are on the remicade and can you have a couple beers while on it, with the 6mp the doctor told me I couldn't drink at all.  I am new to this site, but I think this is a great place to chat about all the BS we go through with CD.
43 yr old F, diagnosed: June 93
1 surgery, have a stricture right now mad
meds: pentasa 500mg 2 pills 4x a day
zoloft 50mg once a day
yeah  looking forward to a few more 5k's in the spring and hopefully a 10k before next winter..God willing!

Regular Member

Date Joined May 2006
Total Posts : 167
   Posted 12/7/2007 5:26 PM (GMT -7)   
Side Effects of Remicade,

Check with your doctor immediately if any of the following side effects occur:

More common
Chest pain; chills; fever; flushing of face; hives; itching; troubled breathing
Check with your doctor as soon as possible if any of the following side effects occur:

More common
Abdominal pain; cough; dizziness; fainting; headache; muscle pain; nasal congestion; nausea; runny nose; shortness of breath; sneezing; sore throat; tightness in chest; unusual tiredness or weakness; vomiting; wheezing

Less common
Back pain; bloody or cloudy urine; cracks in skin at the corners of mouth; diarrhea; difficult or painful urination; frequent urge to urinate; high blood pressure; low blood pressure; pain; pain or tenderness around eyes and cheekbones; skin rash; soreness or irritation of mouth or tongue; soreness or redness around fingernails or toenails; vaginal burning or itching and discharge; white patches in mouth and/or on tongue

Abscess (swollen, red, tender area of infection containing pus); back or side pain; black, tarry stools; blood in urine or stools; bone or joint pain; constipation; falls; feeling of fullness; general feeling of illness; hernia (bulge of tissue through the wall of the abdomen); infection; irregular or pounding heartbeat ; pain in rectum; pain spreading from the abdomen to the left shoulder; pinpoint red spots on skin; stomach pain (severe); swollen or painful glands; tendon injury; unusual bleeding or bruising; weight loss (unusual); yellow skin and eyes

Incidence not known—occurred during clinical practice
Area rash; bloody nose; burning, tingling, numbness or pain in the hands, arms, feet or legs; change in mental status; clay-colored stools; continuing vomiting; convulsions; dark or bloody urine; difficulty breathing; difficulty speaking; difficulty swallowing; fast heartbeat; general feeling of tiredness or weakness; heavier menstrual periods; hives; hoarseness; inability to move arms and legs; itching, puffiness, or swelling of the eyelids or around the eyes, face, lips or tongue Light-colored stools; loss of appetite; loss of bladder control; lower back or side pain; muscle spasm or jerking of all extremities; noisy breathing; painful or difficult urination; pale skin; redness, soreness or itching skin; seizures; sensation of pins and needles; severe abdominal pain; severe muscle weakness, sudden and progressing; slow or irregular breathing; sore throat; sores, welting, or blisters; stabbing pain; stomach pain; sudden loss of consciousness; sudden numbness and weakness in the arms and legs; ulcers, sore, or white spots in mouth; unpleasant breath odor; upper right abdominal pain; vomiting of blood

From: http://www.drugs.com/cons/remicade.html

Keep in mind all medications have known side effects, some get them, some don't. I never taken Remicade, but i'm sure i'll be on it one day, or something like it.  I hope the best for you on Remicade, I heard from a lot of people on here it works well, however some can't tolerate it at all.  If it doesn't work usually a GI will put you on Humira as it uses a different protein.

Male DX with CD May 2006 @ age 22, Colonoscopy and SBT
Taking Prednisone 15mg (tapering), Imuran 75mg (eventually 150mg I was told), Atenolol 25mg for fast heartbeat (thanks Pred!)
Have used Pentasa, Entocort in the past
Have a safe and happy holiday everyone!

Veteran Member

Date Joined Sep 2006
Total Posts : 845
   Posted 12/8/2007 12:34 AM (GMT -7)   
I have been on remicade for nearly 3 years now and it is the only medication that has worked for me.  As far as the side effects goes, it is really different for every person.  I have noticed that a lot of people on this board report no side effects, but that has not been the case for me.  The first infusion that I had was given to me when I was hospitalized. I had severe nausea and vomiting, but after each infusion since the side effects has become less and less intense.  I ususally plan on being sick for 2-4 days after each infusion, with fatigue, nausea, headaches, flu like symptoms, and abdominal pain.  I have noticed that everytime my dose was upped, that the side effects got worse. 
 Believe it or not, I am not trying to scare you.  I would much rather take the side effects of the Remicade, then feel like I did before the infusions.  Due to the fact that I have been building up antibodies toward the remicade, I tried to switch to Humira once, but became so ill that I begged to go back to the remicade.  One thing that I suggest is to have your doctor premedicate you with benedryl before each infusion.  This has really helped me with the swelling and nausea that I would experience during each infusion. 

New Member

Date Joined Nov 2007
Total Posts : 5
   Posted 12/8/2007 3:11 AM (GMT -7)   
defubateky watch out for the side effects that thenay posted for you. I started about a year ago and haven't really had any side effects except that it wipes me out for about 24 hours. I usually sleep the most of the afternoon after my infusion so I alwyas take that day off work. I would suggest taking off the days you get it in the beginning just to see how you respond.
I respond very well to the remicade, it actually helped my inflammation A LOT. so far I've been able to avoid surgery for a stricture. the inflammed area opened up about 3 months after I started the remicade. However, I can't go 8 weeks between infusions. I was ending up in the hospital with a flare around week 6 or 8, so my doc switched me to getting it every 4 weeks instead of every 8 and it has made a HUGE difference. I was scared to death teh first day I got mine. I was so afraid that I would have a bad reaction or something, but I didn't.
My father is a pharmacist, actaully the pharmacy director for the hospital we go to, so I was able to get lots of information on the drugs I'm taking. I would suggest looking carefully at all the info about remicade. some of the stuff sounds scary, but they have to tell you all the possibilities, and every one is different. I wish you the best!
Diagnosed with Crohn's July 2006
Pentasa 1g 4x's a day, protonix 40mg twice a day, Asazan 150mg, Prednisone 20 mg, remicade every 4 weeks, cymbalta, B-50, Calcium, Folic Acid, Zinc, digestive enzymes.
Gallbladder removed in 2005.
Lortab 10 prn for pain. I usually take two.
Hospitalized 6 times since January 2007.

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 12/8/2007 3:29 AM (GMT -7)   
Hi I am also on Remicade and I have no-side effects. I have been on Remicade for over 2 years. I also take Imuran with is a 6mp drug and also no-side effects from the drug.
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

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 12/9/2007 9:15 AM (GMT -7)   
Hello. I have had really no side effects and I think the remicade really helped me heal. It sounds like one of the more common problems happens during the infusion because this is a drug the body can object to right away -- you can get an alergic-type reaction. They start infusing just a small amount of remicade, wait 20-30 minutes, give you more, wait, more, etc. (which is why the infusion takes about 2 hours). Then you are OK because your body has adjusted. I like my GI doc because he takes no chances with an adverse reaction. I take 25 mgs of benedril right before the infusion (I like the fast-acting, quick dissolve films you can buy over-the-counter). Then they infuse a steriod before the remicade. I've had no reactions and attribute that to the steriod and the benedril. Definately ask your doc about these pre-meds!

I usually have a mild headache for the rest of the day so I go home and take it easy. I find hydration really cuts the severity of the headache -- drink A LOT the day before and the day of the infusion.

Let us know how it goes for you!

Veteran Member

Date Joined Feb 2003
Total Posts : 1811
   Posted 12/9/2007 11:10 AM (GMT -7)   
In January I'll have been on Remicade for 6 years. I have no side effects except for 2 - the day of the infusion I'm tired and feel like I want to sleep, but it's not bad and somedays I forget that I'm tired and can carry on business as usual. 2ndly- I have developed chronic sinusitis. That means I always have post nasal drip and my nose always feels a little stuffy when I lay down. But it is not like having a cold all the time, nowhere near that bad. For me it is a small price to pay for all the good remicade has done for me (saved me from surgery, I've had 2 healthy babies, etc.).

Forum Moderator

Date Joined Feb 2003
Total Posts : 15332
   Posted 12/9/2007 1:38 PM (GMT -7)   
Hello, I was on Remicade three and a half years. I did fine until the third infusion, nurse had just increased the flow rate and suddenly had chest pain and felt like I could not breathe. I truly thought I was having a heart. From that time on, I was always give pre-meds and had no problems. They did stop the infusion and gave me pre-meds, waited a bit and resumed the infusion. It helped me alot.
One thing I did, was when I got home, I took extra strength tylenol for 2 days. That warded off any joint pain or headache. Try not stress too much. My doc was ok w/Tylenol. If something does not feel right it to the nursr
Be sure to take book, puzzle, anything to help pass the time. You might take a little snack, dvd player. It can  get boring. By the way, I am  Imuran, dr says it enhances the effects of the Remicade. It took my infusions 3-4 hours. Good luck and let us know how  things go.              Susie

New Member

Date Joined Dec 2007
Total Posts : 13
   Posted 12/10/2007 9:14 AM (GMT -7)   
Hey Everyone thanks for the advice it is helping put my mind at ease, I will give you an update when I start the remicade.  How are your energy levels on remicade, they sound like just around the time of the infusion, do you get you energy back in a day or so?  I want to start running again.

Thanks again, and happy holidays!!

43 yr old F, diagnosed: June 93
1 surgery, have a stricture right now
meds: pentasa 500mg 2 pills 4x a day
zoloft 50mg once a day

looking forward to a few more 5k's in the spring and hopefully a 10k before next winter..God willing!

Post Edited (runner43) : 12/10/2007 9:22:44 AM (GMT-7)

Veteran Member

Date Joined Feb 2003
Total Posts : 1811
   Posted 12/10/2007 1:11 PM (GMT -7)   
Well, I have a 3 year old and a 1 year old so I don't have the luxury of not running around. :) Actually, I keep up quite well. So, hopefully you will too.

Regular Member

Date Joined Jul 2007
Total Posts : 456
   Posted 12/10/2007 1:25 PM (GMT -7)   

I've only had one infusion so far, but I didn't notice any fatigue afterward.  Or at least, no more than what's been "normal" lately.  One dose probably isn't the best sample, though. 

It hasn't even been a week yet, and I'm already seeing improvement.  Over the weekend I had enough energy to do a few chores around the house and even cook real food that required chopping!  Not bad considering I slept for four days straight over the Thanksgiving weekend.

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