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01-08-2012, 09:28 PM   #1
CRAZYLEGS
 
Join Date: Dec 2011
Remicade

Hello Folks, I am looking for any info that you care to share with me, regarding Remicade. I was dx with UC 19 years ago and for about 1/2 of that time have been able to function because the disease was in remission. Unfortunately for the past 2 years it has reappeared with a vengeance! Prednisone is no longer an option although I am still taking 25mg per day. In Aug of 2011 my Dr. put me on Imuran and I could tell after the first week that it was working. I continued to take Imuran for approx. 2 months and my UC symptoms were lessening all the time BUT I was feel ing very weak and tired. I went for blood tests and the same day was hospitalized. They put 6 units of blood and 1 unit of platlets into me while I was in the emergency room. They found that the Imuran had caused my bone marrow to stop producing blood. My white cells were criticaly low, my hemoglobin was at 57 and my platlets were at 17. The Dr. told me that I could hve quite easily have died! They took me off all meds and my blood counts came back to normal. However, because I was off all drugs, my UC came back as well. I saw a specialist this past Fri. and he wants me to try Remicade. Needless to say, I'm a little gunshy. He wants me to stay on a dosage of 25 mgs of Prednisone till after my second treatment of Remicade and then reduce by 5mgs per week. Does anyone have any experiences with Remicade and would you mind sharing them with me. Thanks very much in advance. Sorry for the long post. I'm fairly new to the forum and am a little nervous. Thanks again, Crazylegs.
01-08-2012, 09:45 PM   #2
Lisa
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Join Date: Apr 2010
Location: New York

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Hi crazylegs and welcome to the forum. Please take a look at the Remicade Forum - there is tons of information and stories there!

I myself have been on Remicade since 2005 with success.....hope it does the same for you!
__________________

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
01-09-2012, 10:42 AM   #3
CRAZYLEGS
 
Join Date: Dec 2011
Thanks so very much for the reply. I wiil go to the Remicade forum and I wish you continued success with your treatment. Crazylegs
01-09-2012, 12:09 PM   #4
moogie
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Join Date: Jan 2011
Location: Laval, Quebec
Remi when it works is a miracle drug!!
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I'm the Rat Man!!
DX - CD summer of 1987
Current Meds -
Remicaide
Getting Remicade every 8 weeks
Getting 5mg now. full dose. cost 5500$ )
Purinathol 75mg a day


3 resections
2 colostomy
One Ileostomy
Back to normal since May 2015
On Remicade Since April 2011 I am alive again!
01-09-2012, 12:18 PM   #5
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Join Date: Dec 2011
Good for you!!! Thanks for the reply, Crazylegs
01-09-2012, 03:57 PM   #6
Jessi
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Hey, CrazyLegs. I hope you don't that I moved this thread to our Remicade Club.

I'm on Remicade, and I was afraid to try it too. But I'm really glad that I did, because it helped to put me into remission. I hope you have the same luck that I did.
__________________
~Jessica

Dx'd with Psoriasis in 1993
Dx'd with Psoriatic Arthritis in 2004
Dx'd with Ulcerative Colitis on May 18, 2011

"Life isn't about waiting for the storm to pass... It's about learning to dance in the rain." ~Anon.
01-09-2012, 04:55 PM   #7
snowchic
 
Join Date: Oct 2011
Location: Virginia Beach, Virginia

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Hi CrazyLegs,

I was on Remicade for 10 years, and it worked great. I moved and had to get another doctor who decided that Remicade didn't work any more and put me on CIMZIA. I don't feel that it works as well as Remicade, which is why I'm going back to the doctor who originally diagnosed me with Crohn's and started me on the Remicade. I'm hoping I can go back on it if it's safe.

I'll keep you posted.

Rhonda
02-01-2012, 04:53 PM   #8
CRAZYLEGS
 
Join Date: Dec 2011
Hello All, I'm going for my second infussion tomorrow and I feel good ! The first one made a marked improvement and I'm looking forward to even better things. My symptoms are cut by over 1/2 and I feel a lot more energenic. On a different note, does anyone know if Remicade is used for Arthritis? I thought that I saw in some of the posts that Arthritis was mentioned. I'm not asking for myself, (thankfully) but for a good friend.Thanks from Crazylegs
02-02-2012, 12:14 PM   #9
moogie
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Join Date: Jan 2011
Location: Laval, Quebec
Hello All, I'm going for my second infussion tomorrow and I feel good ! The first one made a marked improvement and I'm looking forward to even better things. My symptoms are cut by over 1/2 and I feel a lot more energenic. On a different note, does anyone know if Remicade is used for Arthritis? I thought that I saw in some of the posts that Arthritis was mentioned. I'm not asking for myself, (thankfully) but for a good friend.Thanks from Crazylegs
Yes it is. I actually have my infusion with a gentlement that uses it for that. He has terrible pain in his hands.
02-02-2012, 01:54 PM   #10
Crohnaroideramasis
 
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Join Date: Aug 2011
Location: Las cruces, New Mexico
I've had a remarkable improvement in only two infusions! I feel like I'm finally on my way to getting better. Good luck to you!
02-02-2012, 06:42 PM   #11
CRAZYLEGS
 
Join Date: Dec 2011
I'm in the chair getting my second infussion as I type. All is well and I thank you for your replys. I feel that this is going to make a huge improvement in my quality of life! What a relief. Thanks again, Crazylegs
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