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New here!

:sign0144:Hi all! Just wanted to introduce myself. I was dx'd in Sept 2014 after a flare up that landed me in the hospital. I'm still struggling to get this flare under control and I'm starting to get frustrated. :ymad: Is it normal that it takes months to get leveled out? Anyway, I look forward to reading y'all's stories and making some new online friends.
 
Welcome to the forum! So sorry to hear of your dx! It can take some time to get everything under control.

Sometimes it is helpful to keep a journal of your symptoms and such so the GI can be aware of how you are responding. Of course, regular blood work and communication with the GI is important as well.

What meds are you on at this time?
 
I was on Pred 20 mg/day until I finished weaning off two weeks ago. Also I am taking Lialda 3 X a day. Unfortunately I started with major D and stomach/abdominal cramps and wound up in the ER last week dehydrated. Since it was night time when I discharged the GI on call from the practice I've been seeing put me on Entocort 3 a day. I'm kinda unhappy with the GI I've been seeing though since at the last two office visits he has walked out of the room while I'm still asking questions.

So today, the nurse calls and tells me they want me to switch to Pred 40 mg a day. I was miserable with the side effects on Pred and I don't really want to switch so idk what to do right now.

Anyway, that's my war and peace. Thanks if anyone hung in to read it. However, I could use some advice if someone is willing to offer any. :sign0085:
 
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I would say that the Lialda isn't enough to get you where you need to be. It is approved for UC which affects the top layer of the intestine. It is px'ed off label for CD but CD is transmural meaning it affects all layers of the bowel. Due to this 5ASAs, like Lialda, usually aren't enough to control the inflammation in CD.

I can understand not wanted pred again as it can have some nasty side effects. Pred is generally used to dampen the inflammation like a rescue med while the maintenance med is started and given time to reach therapeutic levels. Common maintenance meds are immunosuppressants like imuran/6mp and methotrexate and/or biologics.

There are two approaches:

Bottom up: starting at the bottom of the pyramid with 5ASAs or immunosuppressants and as a med fails you move up to the stronger meds.

Top down approach: Starting at the top with the big guns to try an hit the inflammation hard and possibly allievate prolonged flare and inflammation.

A rescue med may be used with either approach.

If you aren't happy with the GI a second opinion may be in order.
 

David

Co-Founder
Location
Naples, Florida
Welcome to the community.

I just wanted to chime in and say that if you're not happy with your GI, find one that you do like. You're in this for the long haul and being comfortable with your GI is of utmost importance. Please find one you like.

All my best to you.
 
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