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sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 7/16/2010 2:49 PM (GMT -7)   
Well... things are not going well in fact I feel like I was hit my a truck.  Headache, dizzy, nausea, can't eat, diarreah, gas, stomach spasms, mucus, blood, and horrible leg pain, yuk.  I have a new Gi who will be handling my transition off of remicade.  (since it aint workin anymore apparently).  I couldn't go to work today, could barely move.  Dr will see me on monday morning.  Not sure what they can even do since the last remicade infusion was 3 weeks ago.  I can't take steroids either.  This is no fun.  :(  May have to go to er if it gets worse.  I am basically inflamed from mouth to a**.  Sorry to complain but only you guys will listen and understand:)
Current meds:  Remicade
Tried:  Prednisone, sulfasalzine, lialda, antibiotics, imuran
29 yr old female w/ crohn's colitis and SEVERE leg pain
 
 


RedSoxGirl85
Regular Member


Date Joined Jun 2010
Total Posts : 265
   Posted 7/16/2010 2:51 PM (GMT -7)   
Sorry to hear you aren't feeling well. Hope you start to feel better so you can enjoy your weekend. Wish they could see you sooner instead of Monday!
RedSoxGirl85
50mg 6MP
10mg Prednisone
1000mg Sulfasalazine 3x Daily
50000IU Vitamin D Once a Week
Zofran ODT As Needed
100MCG/ML INJ, 1ML Cyanocobalamin B12 Every 3 Weeks
 


grayeyedblonde
Regular Member


Date Joined Jul 2008
Total Posts : 383
   Posted 7/16/2010 3:41 PM (GMT -7)   
Wow, sorry to hear you are so bad off. I can understand why you chose the name you did if you are going through all that! Hope you start to feel better and definitely go to the ER if you start feeling even worse!
Dx'd w/ Crohn's in 1979 at age 13. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. 2 fistula's, perianal and perivaginal.

Humira, probiotic, a multivitamin, calcium, magnesium, zinc, and fish oil. I also take Tramadol 50 mg and Klonopin (for anxiety) as needed.

Life may not be the party we hoped for, but while we are here we might as well dance!


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 7/16/2010 4:09 PM (GMT -7)   
thanks for hearing me out. Wonder if they can do anything though. I'm ready to move on to Cimzia or Humira but I dont think they will do it this early. Any thoughts or advice greatly appreciated.
Current meds:  Remicade
Tried:  Prednisone, sulfasalzine, lialda, antibiotics, imuran
29 yr old female w/ crohn's colitis and SEVERE leg pain
 
 


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 7/16/2010 8:32 PM (GMT -7)   
Actually, some doctors believe in the "top-down" approach, so starting with the immune modulators (imuran/AZA, 6-MP, mtx) or the biologics (Remicade, Humira, Cimzia). If you've been on the Lialda and sulfazalamine for a while and they're not cutting it, I would definitely ask about biologics. Some people get nervous about them, but Remicade saved me for 2 years...

Hope things get better! And, good luck with talking to your doctor.
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09

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