need some advice...please...

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mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 9/12/2008 9:24 PM (GMT -7)   
hi there.  i have to admit- as i start feeling better i tend to neglect the site for a while...sorry...but i'm back :(
I've been feeling pretty crappy for a couple of months now.  doc convinced me to go on prednisone again- started out at 60 a day and after a couple of days felt better.  tapered down to 30 and then started getting worse again- back up to 50 mg a day but it's not doing a darn thing this time.  doc started me on 6mp but then decided it would take too long.  now he's tapering the pred to get me off, stopped the 6mp and he wants me on cimzia for faster results.  i'm scared of the drug, but i can't feel like this anymore (and the pred has become unbearable-- moon face, acne, wife thinks i'm a jerk due to the mood swings, haven't slept in a month it feels...)
 
anyway if anyone is taking cimzia any thoughts?  also i'm wondering if i have a stricture...it's really hard to go to the bathroom and when i do it hurts like hell in my lower center stomach.  most of the time the urgency leads to not much more than a bit of blood etc.  i'm getting a ct scan on mon.  not throwing up which i have read is a sign of a stricture, but something's not feeling right.
 
If it is a stricture what will they do?  this is the worst flare i've had in years and years...ahhhhhhhhhhhh
 
thanks for any help!!!!!!

kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 9/13/2008 2:43 AM (GMT -7)   
I can't help with the cimzia, I'm currently waiting for insurance to approve Humira, but I had a stricture last year. I never threw up from it. I ended up having a bowel resection, while not exactly a good time, it wasn't too bad and I felt better than I had in months just a few weeks after having it done. They diagnosed my stricture as needing surgery from a CT scan, wouldn't let me leave until I scheduled with a surgeon, and had surgery less than 2 weeks later, so it sounds like you're going in the right direction. I help you feel better soon!
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, vicodin as needed, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 9/13/2008 2:45 AM (GMT -7)   
cant help either, but can wish good luck...
randynoguts 



     http://www.geocities.com/randynogutsweb/


29Lancelot
Regular Member


Date Joined Aug 2008
Total Posts : 37
   Posted 9/13/2008 7:37 AM (GMT -7)   
While Prednisone works wonders it literally leaves behind the scars of its battle - adhesions and strictures. This scarring then impedes or obstructs (which is when the vomitting you refer to occurs). To my knowledge once at this stage (obstruction) resection is the order of the day. It would probably be best to report your symptoms and get a scope. I too had this progression of the disease many years back and the surgery while not pleasant or cheery in the big picture, did provide me with several years of improved health.

  • CD dx '86. Re-section '93. Dx Crohn's Colitis '98.
  • Participation in Remicade trials (fistulae) late 90's.
  • Manifestations of fissures, fistula, scleritis, polyarthralgia and erythema nodosum.
  • Presently on Imuran, Cipro, Flagyl and Remicade (2nd attempt - 10 yrs later).  


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 9/13/2008 7:47 AM (GMT -7)   
thank you all for the info and advice.  I guess we'll find out more on Monday with the CT scan.  scope scheduled for Oct. 2nd.  wow surgery...yikes.  i hope not but i guess it is what it is right?  i hope you all have a great weekend!

mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 9/15/2008 9:21 PM (GMT -7)   
so I just got done with my CT scan with contrast.  the stuff they made me drink was sickly sweet- like melted popsicles...awful from the pure sweetness (and the fact I had to drink THREE bottles!!)  anyway the test was ok- IV with more contrast was no big deal...but on the way home I barely made it to the bathroom- that stuff went right through me!!!!  and then while I was sitting on the can I puked also!!  I really wish they had warned me...oh well results in a couple of days.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/15/2008 10:17 PM (GMT -7)   

Wow... I can relate.  Next Monday is my CT and the gallons (or so it seems) of stuff is horrid.  Last time it went right through me also!  It was horrible! 

Anyway, about the Cimzia...  All of the drugs beyond the ASA-5 types are pretty scary.  But, the disease is scary too.  So, weighing the odds and quality of life is what is important.  You can try Cimzia -- if it doesn't work, or feel worth it, you can stop Cimzia. 

I am actually considering taking a "drug holiday" from Tysabri.  Maybe try Cimzia.  it's all bad.  But, we have to live our lives and the disease will prevent that if we don't keep it in check.  Steroids, over time, are worse then the other immune modulators (or so I believe and have been told by a few doctors). 

Maybe you can just take one step at a time and see how it goes.  If Cimzia helps you, I bet you will settle into the idea of being on it.  It's pretty amazing what having your life returned to you will allow you to accept...  Best of luck.


--40 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
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 9/16/2008 1:05 AM (GMT -7)   
the ONE reason im glad im mr noguts! i only have to drink about 12 onces of anything for contrast! if that!ha!
randynoguts 



     http://www.geocities.com/randynogutsweb/

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