How to know if Remicade no longer works??

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heen
Regular Member


Date Joined Apr 2004
Total Posts : 256
   Posted 2/18/2008 6:47 AM (GMT -6)   
I've been on REmi since May 07.  It seemed to be working very well.  I had my life back and felt like I dindn't have the disease.  It was Great!!  Right before my last infusion (Jan 10). I flared up 9 days before --nothing real bad, d and urgency in the rectum area. So I used the suppositories--which helped awhile.  Thinking the Remi would step in and take over....it never did. I then started feeling a little worse and went with the hydrocortisone enemas.  That didn't seem to work.  At this time, I started getting cramps and going 10- 15x's a day and bleeding.  So here we go again, saw the dr, I'm back on predinsone and he is keeping my Remi appt For Mar6 as planned.  I haven't felt this bad since last year before I started Remi. 
 
I wonder, did the Remi stop working?  The only changes with the medicine was that I lost weight so my dosage was adjusted accordingly.  Altough it's not a lower dosage, but maybe my body was so used to the other dosage, it needed more of it.  I am very rare with taking meds.  IE:  when tapering off pred to the lower doses, I actually get worse and go through severe withdrawal.  I'm afraid of taking it, but it's my only choice at this point.  Maybe my body is craving more of the Remi??
 
The other thing the dr adjusted was my imuran form 100 to 50 mgs. So, for a month I was on 50 mgs.  He upped it here during this flare to 100 mgs.
 
Aside from that, I had been going through some stress.   My daughter has mono---Our fine Emerg Room people never tested her for mono and said she had hepititis!! FREAk Out is right!!   Wasn't until I saw my family dr  That he ran the mono test and that's what it was.  Thank God!!  In fact that is the week my symptoms got at the worst.
 
So, with everything else going on and missing work because of this disease....yep I'm a little stressed!
 
Whether or not you may have any answers, I sure appreciate any input.  Just needed to vent!!  I know that's what we are here for!! 
 
 
Remicade- 7th infusion Jan 10,2008
Dx with UC In Mar 2004. Mainly Left sided, at times has skipped through the whole colon. Also have IBS.
50mgs of Imuran, Asacol 3/3x's day, Bentyl as needed
Holistic approach- supplements- fish oil, probotics, gut repair, allergy enzyme, paleofiber
 
 
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/18/2008 8:22 AM (GMT -6)   
It may be from the lowered doseages of Remi and Imuran. I am assuming your Remicade dose went down a vial because you lost weight? I would ask my GI to change the dose to what you used to take. I started to flare before my next infusion so my GI changed it to every 6 weeks which did help for a while.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


heen
Regular Member


Date Joined Apr 2004
Total Posts : 256
   Posted 2/18/2008 11:01 AM (GMT -6)   
Yeah, I thought it could've been the combonation of every thing. I guess I'll have to wait until my next appt. Although the dr told me the reducing a vial of Remi due to my weight shouldn't have been a factor, since it's the same dose for my body.

I noticed you are starting Humira..........is it approved for UCers?? Just wondering if insurance would cover it.
 
 
Remicade- 7th infusion Jan 10,2008
Dx with UC In Mar 2004. Mainly Left sided, at times has skipped through the whole colon. Also have IBS.
50mgs of Imuran, Asacol 3/3x's day, Bentyl as needed
Holistic approach- supplements- fish oil, probotics, gut repair, allergy enzyme, paleofiber
 
 
 


PaloPalo78
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 2/19/2008 2:55 AM (GMT -6)   
Hi there
 
I wonder if you ould help me please , as you have had some experience in taking remicade
 
I am due to have my first infusion in a few days and have had a slight cold , sometimes coughing up phleym etc ...  Do they turn you away of you have a cold ? ..
 
Ive read that you must tell them if you have an infection , are on anitbiotics etc
 
Just wondered if you have had anything like that before you went in for the infusion
 
 

Sue In Indiana
Regular Member


Date Joined Aug 2006
Total Posts : 30
   Posted 2/19/2008 5:34 AM (GMT -6)   
 I'm having the same problems as you with the Remicade....been on it for 1 1/2 yrs. and all of a sudden I start bleeding and now I'm into a pretty bad flair with massive blood different times of the day. Makes my job impossible.  My Dr. doesn't know what to treat with til I get a sig something and I have no one around here to take me until my husband can take off in 2 weeks.  I do pray a lot! And for a miracle too! 
 
The nurse did tell me people do get mini flairs on Remi that I'm not the 1st one and then they get better.
 
I try to keep my spirits up but it does get one down.
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