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Maintainence Theraphy Theory?

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Crohn's Disease
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Mandolen
Regular Member
Joined : Aug 2006
Posts : 186
Posted 8/21/2007 1:18 PM (GMT -8)
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.

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dragonfly137927
Veteran Member
Joined : Sep 2006
Posts : 2527
Posted 8/21/2007 1:30 PM (GMT -8)

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. :)

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njmom
Veteran Member
Joined : Apr 2006
Posts : 1885
Posted 8/22/2007 8:35 AM (GMT -8)
What??? Crohn's doesn't need maintenance therapy? You might want to get a second opinion.
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Nanners
Elite Member
Joined : Apr 2005
Posts : 14999
Posted 8/22/2007 9:05 AM (GMT -8)
I second njmom!!! Yes you should be on some kind of maintenance therapy.
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Matthew
Veteran Member
Joined : Oct 2004
Posts : 3932
Posted 8/22/2007 10:27 AM (GMT -8)
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
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beave
Veteran Member
Joined : Mar 2007
Posts : 2411
Posted 8/22/2007 11:05 AM (GMT -8)
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.
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Mandolen
Regular Member
Joined : Aug 2006
Posts : 186
Posted 8/22/2007 12:51 PM (GMT -8)
HA! Ya'll rock!

In any event, he did let me stay on the the Remicade. :)

 

Best,
M.

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