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falling apart in Arkansas
Regular Member


Date Joined Feb 2008
Total Posts : 32
   Posted Today 5:22 PM (GMT -7)   
Hey all.............have been in a bad flare for about 2 yrs now. They have tryed Endacort,  now on 3000 pentasa, steriods, 6-mp, and Nortriptyln for pain. But nothing seems to be working. So they started me back on Remicade. Had my first treatment last Friday 4 viles,( IV steriods (100mg) benadryl, and tylenol, before my remicade was started) Well here is my question, to someone who has been through this before,(I have had it but it was 7 yrs ago, Don't remember much about how it worked, well it did't work , ended up having to have sergery anhyway) how long does it take to start feeling something, and has it ever effected musles or joints. I woke Saterday morning with bad pain in my righ hip. No never had this problem before. I am not feeling any diffrent since the treatment..................when does it start working, If it is going to work?  Thanks
 

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13467
   Posted Today 10:37 PM (GMT -7)   
I do hope your dr is doing the usual loading dose as if you are starting Remicade for the first time. It was on my 3rd infusion before I could tell it was working. Don't give up yet. Susie


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted Today 10:53 PM (GMT -7)   
I'm confused? What do you mean 4 vials? Remicade is a single infusion, not an injection.

I had the loading doses. Week 0, 2, & 6 and then every 8 weeks thereafter. Remicade was very kind to me and I felt it's full effect shortly after week 6 and then it was about 6 weeks thereafter my colonoscopy revealed I was in complete remission. I was able to maintain on it for about 2 1/2 years. Even went through a very complicated pregnancy with it. It was a wonderful drug to me until it stopped working.

I wish you much luck! Again, give it some time. It's certainly a miracle drug for some, but it DOES take time to kick in....I think most people don't get the full relief until after that 3rd loading dose, as straydog said.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13467
   Posted Today 11:02 PM (GMT -7)   
Kaycie she had 4 vials used to make her infusion. I received a total of 400mg on each infusion. The hospital charged my ins for 5 vials per infusion. It was mixed by the hospital pharmacist. Susie


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 12/8/2008 3:52 AM (GMT -7)   
Hi, I have been on remicade for 5 years. It can take up to 3 infusions to notice anything.
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.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


Erik45
Regular Member


Date Joined Oct 2007
Total Posts : 149
   Posted 12/8/2008 7:37 AM (GMT -7)   
about 3 treatments as well for me.
Crohns for 13 years
1 surgery so far
2 times in hospital for blockages
MEDS:
Remicade
Imuran
B12 Injections


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 12/8/2008 8:23 AM (GMT -7)   
straydog said...
Kaycie she had 4 vials used to make her infusion. I received a total of 400mg on each infusion. The hospital charged my ins for 5 vials per infusion. It was mixed by the hospital pharmacist. Susie

Thanks straydog.  I understand what you mean.  When they charge my insurance, they never break it down.  They just lump sum it, so hence why I misunderstood that piece of info.
 
 
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 12/8/2008 3:34 PM (GMT -7)   
I've had my Week0, Week2, and have my third loading dose coming up next Monday. I could tell it was working the night of my first infusion. I had a lot of terrible joint pain and swelling and it got rid of it right away. I went out and walked my dog that night. It was amazing.

I talked with one gal at my first infusion and she said it took 3 times for it to work for her. I guess I am very responsive to it.
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
Remicade (First Infusion 11/3/08) yeah

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