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Nikiangel
Regular Member


Date Joined Nov 2009
Total Posts : 29
   Posted 3/25/2010 4:12 PM (GMT -7)   
Hi.  I came to the Crohns Disease forum because someone suggested I may get the answers I need.  I have JRA had it since I was 2.  My doc has decided that I should try Remicade.  I have read so far that people are having bad reactions, ie. lupus like symptoms, headaches, hives, joint pains.  I have a 6 yr old and the point of switching me was so I can get rid of my joint pain.  If anyone has been on Remicade can you tell me your experience?  Im nervous and a little scared and just really wanna be out of pain and function at this point.
 
Thanks,
Niki

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 3/25/2010 4:38 PM (GMT -7)   
I'm to start remicade as well, and am very nervous about it as well, I'm on imuran and pred. pre4d helps but imuran desn't do to much, i have had 4 surgeries and 2 recections, so i have inflammation and narrowing, but now cd has moved up my throat mouth blisters and tongue leasions, but I'm tired of looking up side effects. I always am interested in peoples bio so I glanced at yours, horseback riding is one of the greatest  most relaxing things you could possibly do, I've been riding since I was 4, I'm 59 now and i was a horse jockey for 18 years, so I ride horses like you would walk,it's second nature to me. the key to riding is thinking like they do but be smarter than thye are, i know all they're behavor patterns, so that does take years to learn, not so much for me because i was raised with them, my wife the same.good luck to you

artist guy


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/25/2010 5:18 PM (GMT -7)   
I have been on Humira. Remicade. Cimzia. All TNF's.
I never had any adverse reactions. But Being a Male that also contributes.

Data does show the female's are more prone to Autoimmune disease and certain adverse reactions such as lupus-like sydrome etc..

Doesn't mean you will get these. Very Rare at most.

I know plenty of females as well as MANY ladies on this Site who do very well with simple flu like or common symptoms at most. You will never know until you try it.
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Current: Methotrexate Injection, Entocort EC, Vitamin D, Fentanyl 25mcg / 72hrs - Zofran - Folic Acid
Currently On SSDI


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 3/25/2010 5:45 PM (GMT -7)   
I have been on remicade for 5 1/2 years.  It has given me my life back.  I have no side effects from it.  Good luck!

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 3/25/2010 6:08 PM (GMT -7)   
My husband has been on remicade now for the past 2 years. It literally saved him from needing surgery (and coming home with 2 bags). Anyway, it has been a miracle drug for my husband so far (knock on wood and pray it doesn't change). Anyway, he is pre-medicated with solumedrol and benedryl before the infusion to avert any infusion reactions. After the infusion for about a day and half he has some joint/muscle pain and flu like symptoms, which are controlled with tylenol. After that, it's back to normal. He has suffered no additional respiratory infections or any other side effects. His doc checks his blood work periodically and it has not impacted his numbers for anything negatively. He usually gets it friday and just takes the day off work, and recuperates over the weekend. It's only once every 8 weeks, so it's actually nice in a way to take the friday off.

Hope this helps, and I hope remicade is good for you!

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


What A Life
Regular Member


Date Joined Mar 2010
Total Posts : 116
   Posted 3/25/2010 6:37 PM (GMT -7)   
Remicade was my miracle drug originally... Until I quit my job and couldn't afford it with my new insurance. I was on it for about two years and the only symptom I had of Crohns was a stomach ache once every few months. People get reactions, sure; but it's worth a shot to feel normal again. If you do have a reaction, the nurses are there to help you out. There are precautions they can take (such as the benadryl to help some reactions). Benadryl just put me out very quickly!
28 Y/O Male DXed Crohns in 2000.
Fistulotomy/Fistulectomy 2001
Been on many meds including Remicade.
Asacol and Pentasa on a when-needed basis as of recent
Current regimen: Diet and Exercise.


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 3/25/2010 6:40 PM (GMT -7)   
Remember that people are far more likely to post if they are having a problem rather than if everything is going well. I was afraid of remicade too but the nurse practicioner I talked with was actually a remicade user herself. With her counsel I went on it. I will get my third infusion on Tues. So far no dramatic results but moderate ones. I am optimistic.
 


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 3/25/2010 6:50 PM (GMT -7)   
Remicade has done a nice job for my Crohn's. I'm quite sure the percent of people who have bad reactions is low, so I wouldn't worry about it too much.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


Nikiangel
Regular Member


Date Joined Nov 2009
Total Posts : 29
   Posted 3/25/2010 7:18 PM (GMT -7)   
thank you all sooo much for your responses.  I have been so nervous.  My nurse assures me its fine, but this is the first time I'm having a IV and i guess I'm just a wreck.  I pray that all of you are well.  Thanks for easing my mind.
 
God Bless
Niki

wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 3/25/2010 9:04 PM (GMT -7)   
Remicaide worked well for me for about 2 years then I recently developed antibodies to it so it became ineffective.  I just started Humira and am hoping that works for me for now!
33 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, Humira, 55 30 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
 
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
 
 
 


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 3/25/2010 9:37 PM (GMT -7)   
In 4 weeks I'll have been on remicade for 3 years no side effects. It has reduced flare up in duration especially and has really worked well on the arthritis. for the first 2 years no arthritus at all. Now It has come back but in a very much less painful and crippling form and again lasts much shorter times.


Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.

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