Maintainence Theraphy Theory?

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Mandolen
Regular Member


Date Joined Aug 2006
Total Posts : 186
   Posted 8/21/2007 2:18 PM (GMT -7)   
I go see the GI tomorrow for a follow-up to how the Lotronex is working for my IBS-D and how my CD is doing.
 
Honestly, I'm feeling better these last four weeks than I have in over a year and a half! HOLY GOODNESS!!! So, naturally, I want to stay on my current meds.
 
The last appt, my GI wanted to take me off the Remicaid because my CD is in remission...only I don't want to get off it. What's your theory on staying on maintenance therapy vs only taking the meds when you need it (I think I'll always need it!).
 
I just don't want to let myself get like that again. It's one thing to get sick and you not know why...it's another to get sick and know that you might've been able to prevent it if you had stayed on the meds instead of using them only prn.
 
...Also, I do believe that getting off the Remicaid and then back on isn't healthy. The GI said he didn't see a problem with it, and 'Unlike UC, Crohn's doesn't have to have maintenance therapy'...but I just don't feel 'safe' without them.
 
What do you think?
Best,
M.
Diagnosed with Crohn's 5.2006 by: Capsule Endoscopy, Prometheus Labs IBD-First Step
7.2006-Dx'd with Severe CD by Colonoscopy (Have had 3 scopes in 1 year!)
Gastroparesis, Severe IBS-D
Remicade, Prevacid, Colazol, Lotronex
 
 
 


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 8/21/2007 2:30 PM (GMT -7)   

Hello,

I was in remission for about 1 yr.  My Dr spread out my remicade from 6 weeks to 8 weeks.  This worked well for a while then I started to flare exactly 1 yr ago.  Since then I was placed on miralax, entocort and multiple rounds of pred.  In the end my ileum perforated and I needed surgery.  They removed all of my diseased area but the GI insists on staying on maint. drugs after surgery.  I am glad you are doing so well. :)


Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 8/22/2007 9:35 AM (GMT -7)   
What??? Crohn's doesn't need maintenance therapy? You might want to get a second opinion.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/22/2007 10:05 AM (GMT -7)   
I second njmom!!! Yes you should be on some kind of maintenance therapy.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 8/22/2007 11:27 AM (GMT -7)   
Yeah, you can get 3 differant opinions from 2 gastros as regards maintance therapy. I was told initially I'd be on Pentassa for the rest of my life. A different GI told me, no, there is no proof that its required or prevents flares. So after more than 15 years of this, I still don't know what the proper course of action is here..

Matthew

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 8/22/2007 12:05 PM (GMT -7)   
Maintenance therapy is considered a necessity by the leading Crohn's and UC specialists. Any doctor who disagrees is out of touch with the mainstream and the leading authorities. Period.

Mandolen
Regular Member


Date Joined Aug 2006
Total Posts : 186
   Posted 8/22/2007 1:51 PM (GMT -7)   
HA! Ya'll rock!
In any event, he did let me stay on the the Remicade. :)
 
Best,
M.

Diagnosed with Crohn's 5.2006 by: Capsule Endoscopy, Prometheus Labs IBD-First Step
7.2006-Dx'd with Severe CD by Colonoscopy (Have had 3 scopes in 1 year!)
Gastroparesis, Severe IBS-D
Remicade, Prevacid, Colazol, Lotronex
 
 
 

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