When Remicade started to fail... what were your symptoms?

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patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 3/29/2008 9:43 PM (GMT -7)   
The more I read all the posts on here, and the worse my symptoms get - the more I think that maybe Remicade is loosing its efficacy in my veins. I'm scared to death of this possibility (even though I know I can switch to humira, etc). Remicade has been such a wonder-drug for me...

So, for others that used Remicade SUCCESSFULLY for several years... But then had to stop taking it because of side effects and/or because it just wasn't working anymore...

What happened to you? What were your symptoms as the Remicade started to fail?
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 3/30/2008 2:42 AM (GMT -7)   
Hi Marianne,
I have been on Remicade for almost 5 years. I would not work about it until it happens. I keep a positive attituide which helps me. I will stay on Remicade as long as it works.

teddybear
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
 


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/30/2008 9:21 AM (GMT -7)   
When it started to fail, I would start bleeding/symptoms earlier and earlier. We moved my infusions to every 6 weeks, then that was too far. Finally I was having them every 4 weeks and still having issues. I didn't have a reaction until I left Remicade for Humira and then tried to go back. It was the second infusion after returning to Remicade that I got hives on my face and in my mouth during the infusion. Also, after that final infusion, there was no effect from the Remicade. It maybe helped for a week...

But, like teddybearwiser says, don't worry too much. I know I stressed too because I felt like I could sense it happening. It's scary, but maybe that isn't what is happening!
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 3/30/2008 9:54 AM (GMT -7)   
I'll try and stay positive guys...

Thanks so much for the advice.

From a different strand on here yesterday I'm starting to think that the culprit could be bacterial, rather than the remicade wearing off...

I'll cross my fingers...

Thanks again.
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


crohnie1985
Regular Member


Date Joined Nov 2007
Total Posts : 140
   Posted 3/30/2008 10:26 AM (GMT -7)   

Hi,

I submitted a simular post here too, I feel I am also feeling that Remicaid is becoming less effective as I have pushed the infusions closer and closer. Now I am on a 5 week cycle, and I also see blood and the other signs that the crohns is just there waiting to flare. I go Tuesday for my next infusion, only because I requested it sooner because I feel so bad, I do not want the crohns to get out of control. I will be asking some questions while I am there to, maybey I can try something else. I will be following any posts here also. I hope things improve.


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 4/1/2008 9:42 AM (GMT -7)   
As I developed antibodies to the Remicade, I just noticed that the stomach pain would return sooner and sooner each time.  We went from every 8 wks to every 6 wks, but the pain started returning a couple weeks after the infusions. 
 
I also started having allergic reactions, even after premedicating...basically, I just got really hot all of a sudden and felt like from my neck up was on fire.  I felt like I was going to pass out and my heart was racing.  Then, immediately, I would have to have a BM. 
 
On my last infusion, which had to be done over 12 hrs in the hospital (with a 19 hr admission), I still started to have a reaction (but was able to finish the treatment) but could never even tell I'd had a treatment, as far as pain was concerned.  After all that trouble and not feeling any benefit from the treatment, I decided to try something else. 
 
I think you will know when it has stopped working and when it's time to try something else.  I sure could feel the difference.  Good luck! 
...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 4/1/2008 12:46 PM (GMT -7)   

I just had symptoms more and more - I was in pain, bleeding, couldn't eat, etc. It was almost like I wasn't getting any medication at all.

After a few months, I started to react. My throat swelled up, turned red, heart raced. Stopping the med and giving Benadyl stopped it, then we slooooooooowely restarted and it took hours.

After my first hospital stay, my GI told me he thought I had built antibodies to it - thus, the flare I was now in and the reaction.

So, we tried Humira. It worked immediately. I wish I had taken the symptoms more seriously months prior instead of waiting until I had to spend 2 weeks in the hospital.

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