# Uceris



## AZMOM (Apr 8, 2013)

Anybody try Uceris yet?  It's Entocort in a new 9mg formulation.  My understanding from Claire's GI is that it releases the steroid across the colon for more coverage.  We started about a week ago and *crosses fingers* I think Claire is feeling just a little better!

Thought I'd share.....worth asking about if your child is currently using Entocort.  

http://www.uceris.com/

J.


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## Jim (POPS) (Apr 8, 2013)

I'm glad it seems to be working for you. I'm kinds new to all this but I just wanted to give you support.

Jim (Pops)


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## my little penguin (Apr 8, 2013)

WOOHOO!!
never heard of it
but glad it seems to be working.


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## AZMOM (Apr 8, 2013)

Yeah it's brand spanking new formulation - pharmacy had to order - but the diarrhea has come to a screaming halt. Im thankful!

J.


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## CarolinAlaska (Apr 9, 2013)

That's great, J!  I'm so glad to read it!


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## AZMOM (Apr 9, 2013)

I should never use the word screaming halt. Last night was screaming constipation. After an entire afternoon of her complaining and dropping one raisinette (our latest food related poop metaphor), I used a glycerin suppository. She retained it a little over half an hour and then tried to go, one little 2 inch skinny piece of hard stool came out. More crying. Abdomen a littlr distended. No relief. Went to pharmacy at 10pm to buy stool softener. Gave it to her and she finally fell Asleep. 

Praying for poop this morning. I had just emailed GI yesterday to tell them I felt like Uceris was working. If she can't poop today, I guess I'll email again. 

I feel schizophrenic.


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## DustyKat (Apr 9, 2013)

Whoa, what a ride J! :ghug: 

The new formulation sounds fab so I hope things even out and Claire gets long and lasting from it. Good luck!!!

Dusty. :heart:


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## Brian'sMom (Apr 9, 2013)

Going from Diarrhea to nothing can be an adjustment. (As you know You're a veteran to all this, I'm still learning- just sending my support) When we started Rowasa Brian went 3 days with no poop! I'll bet it needs some time for everything to adjust. All that liquid to become a log takes time! Brian was even beginning to like the D...'it was easy to get out' he said. (Trying to see the positive I guess!!) 
I'm a firm believer that it never hurts to call tho. That's what we pay the big bucks for


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## Farmwife (Apr 9, 2013)

This is neat.
Grace's GI mentioned putting her on budesonide but since her problem are in her TI and colon this new one would help more. RIGHT?


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## CarolinAlaska (Apr 9, 2013)

sounds right, FW!


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## AZMOM (Apr 9, 2013)

Farmwife - never hurts to ask!

Claire update: still can't "go". Started miralax. 3 days since she went. Not forever but an eternity for someone used to going at least twice a day. 

J.


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## Farmwife (Apr 9, 2013)

Can she do Senakot (?sp). Senakot works with in 6-8 hours. 
Miralax can take a few days. My Grace had to be on 1 1/2 cap fulls every day. Even than it didn't always work.


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## my little penguin (Apr 9, 2013)

Hugs-
welcome to my world - 
suggest a gram scale- incase she has a sweet spot for miralax-( ie 1/2 capful not enough 3/4 capful too much)

we just measure grams - 17g is adult dose btw


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## my little penguin (Apr 9, 2013)

Senakot is a laxative- so not recommended in ibd patients unless really needed.
miralax is an osmotic so not as harsh- just pulls water into the stool.

we push juice and fruit cups ( soft no skins that start with P)
Pears, etc....


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## AZMOM (Apr 9, 2013)

Mlp - he said one capful daily and to update him. Should that amount make me nervous?

FW - I remember Graces constipation issues!  

J.


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## my little penguin (Apr 9, 2013)

no  ds was taking 1 cap a day for a long time-but he is an over achiever.


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## Farmwife (Apr 9, 2013)

Wow mlp, are GI said if Grace goes into day 3 and no bm...give her Senakot. 
Thanks for the info!


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## AZMOM (Apr 9, 2013)

Ok no panic for now then. Just watching.....

Thanks for the support. I've been so excited about the Uceris.....hoping there's not going to be an issue. 

J.


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## my little penguin (Apr 9, 2013)

> What should I discuss with my health care provider before taking Senokot (senna)?
> 
> Ask a doctor, pharmacist, herbalist, or other healthcare provider if it is safe for you to use this product if you have:
> 
> ...


Just for you FW


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## Farmwife (Apr 9, 2013)

:ghug:

Thanks


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## my little penguin (Apr 9, 2013)

http://www.ehow.com/how_2088546_treat-crohns-disease-laxatives.html#page=6

And here 
Enjoy


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## Dexky (Apr 9, 2013)

Never any experience with constipation.  There were times I prayed for a little C but alas, no!  Is Claire still hurting?


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## AZMOM (Apr 9, 2013)

Dex. Yep.


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## my little penguin (Apr 10, 2013)

Farmwife
This why they don't like to over use senna

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2397000/


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## Dexky (Apr 10, 2013)

How's she doing today J?


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## AZMOM (Apr 10, 2013)

Well your timing is spot on . We just had success. Quite dark quite loose but success, nonetheless.


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## Dexky (Apr 10, 2013)

I hope she's feeling better too!!


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## AZMOM (Apr 10, 2013)

I think she is. Different girl than yesterday. Maybe because she's less FOS. :ybatty:

J.


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## Dexky (Apr 10, 2013)

:lol:

Even I got that acronym


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## Brian'sMom (Apr 10, 2013)

It took me a minute...but I got it too!! Ha! Funny  Glad she's 'less' of it


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## DustyKat (Apr 12, 2013)

I hope things are still going well, or should I say that Claire is still 'going' well! 

Now FOS is something I never am! :whistleinnocently:

Dusty. xxx


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## AZMOM (Apr 12, 2013)

She really and truly seems to feel better. No BM yesterday. Im. Not used to days without BMs. We are staying on the Miralax for now though. 

Im pondering canceling the scope. Would you think I've gone mad?


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## DustyKat (Apr 12, 2013)

You are leaving yourself wide open with that question J! :lol: 

When is the scope?? 

Dusty. xxx


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## Johnnysmom (Apr 12, 2013)

I am not sure what's worse D or constipation....

For what its worth, it took a long time to get the right dose of Miralax for Johnny but we seem to have it now and it's no longer a problem for us.  

Hope you find that perfect balance!


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## AZMOM (Apr 12, 2013)

DustyKat 4/19


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## DustyKat (Apr 12, 2013)

Okay...

1. How long would it take to reschedule if you did cancel? 

2. Since this new formulation seems to be having an effect, certainly a change of symptoms, I am in two minds. If things are changing for the better, tweaking of laxative meds aside, then I would be inclined to hold off and do one a little further down the track to gauge exactly how well the Uceris is working, I would start with FC first though as good figures there, coupled with other clinical and physical symptoms, may even have me doubting proceeding with the scope. 

3. What tests are they doing to monitor Claire's progress and how often? 

Dusty. xxx


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## my little penguin (Apr 12, 2013)

OK-
you know I had to answer- scope..
YOU need to know what the issue is and since you just started Uceris you might still be able to "see" it . Point being- when things go south again( cause they usually do) you want to be armed with info prior rather than chasing to catch up and re-scope to figure out what is going on yet again.

 I know its tempting to not do it but you need to really know.


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## AZMOM (Apr 12, 2013)

Okay so five completely liquid urgent stools today. No miralax tomorrow!

My mother (nothing worse than old nurse ) is in your camp, MLP. We'll see how the weekend goes. 

Dusty - takes 100 years. Right now she's an overbook. 

Hmmmmmmmmm

J.


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## Dexky (Apr 12, 2013)

How'd she fare today J?


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## my little penguin (Apr 12, 2013)

In terms of miralax. Three days is length of time of stool in the colon so stopping cold could end back with constipation . Rinse repeat - don't ask how I know.
Kitchen gram scale -
For DS we tend to cut dose in half  For a few days- if  it didn't help then Cut that dose in half .
You may want to ask your Gi.
We now use miralax as needed.


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## AZMOM (Apr 12, 2013)

Thanks MLP. She's now on stool 8 and gut making terrible noises. I'll do half tomorrow and email GI. She's very distressed


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## AZMOM (Apr 12, 2013)

She's nibbling crackers and sipping Gatorade (don't y'all fuss about the Gatorade - it's what she wants when the stools run like a faucet). 

Oh and did I mention she's furious? Who could blame her.....

J.


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## AZMOM (Apr 13, 2013)

MLP - trying 1/2 dose today.....


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## Mylittlesunshine (Apr 13, 2013)

Hi azmom
Hope things go ok for your daughter
Hugs


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## my little penguin (Apr 13, 2013)

hope it goes well-
what did gi say???


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## AZMOM (Apr 13, 2013)

I didn't call the GI on call. Emailed him with what happened and what Im doing.


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## CarolinAlaska (Apr 14, 2013)

I hope the D slowed down today.  Poor Claire.  Ugh!


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## Brian'sMom (Apr 14, 2013)

Hope today was a better day for you guys.


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## AZMOM (Apr 14, 2013)

Another screeching halt oo:  Wouldn't we love to not give a damn who'sgoing to the bathroom, how often,what is the color, what is the consistency, does it hurt, is there blood or mucus?????

Claire and I had a chat about the upcoming scope (Friday).  I told her if she has no pain and feels like we don't need to look I would talk to Acra.  Her eyes got WIDE :eek2: and she said she things he needs to look because, and I quote, "Something's wrong in there"  Love her heart..............

Hoping he either finds a bunch of nothing and we can just keep on keepin on OR that he finds something that we can treat.  I am going to ask him about the Stelara since we've never been presented that option.

And what the hell is with this erratic bowel behavior??  Straighten up, colon.  

J.  

PS There's quite a bit of southern fried swearing in this post.  I think I'm slap happy.  :ybatty:


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## my little penguin (Apr 14, 2013)

Yep- that would be DS- rinse repeat-
which I had an easy answer for you.
I know for him remicade helped
but now that allergy season is in full swing things are back to crazy most days.


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## my little penguin (Apr 14, 2013)

One tip-
 lots of "p" fruit- DS eats three servings of pears a day
juice - non apple ( 2 -3 servings) of v8 fusion juice boxes a day
plus plenty of water- at least half her weight in oz of water for miralax to work .
 for him if we deviate things go back.
Hope you can find the right formula for her.

good luck


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## Brian'sMom (Apr 14, 2013)

AZMOM said:


> Wouldn't we love to not give a damn who'sgoing to the bathroom, how often,what is the color, what is the consistency, does it hurt, is there blood or mucus?????


Oh my gosh do I agree with this statement!!



AZMOM said:


> and she said she things he needs to look because, and I quote, "Something's wrong in there"  Love her heart..............


I love her heart too. These kiddos have to grow up too fast and think about stuff they shouldn't have to be thinking of. I Love Claire's strength and courage!
XOXO


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## CarolinAlaska (Apr 15, 2013)

Sad that she has to know so much about these tests and knows how miserable but important the process is.  Bless her.


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## Dexky (Apr 15, 2013)

That ain't swearin' J!!  Dusty has a PHD in swearing!!  You're still in cursing 101!

I wish I had a dime for everytime I've asked about poop over the last 3+ years now!  How much our well-being hinges on the answer to that question!

I never know to wish for nothing on scopes or clear reasons!  I want what you want!!  Hoping for better days for C!!


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## AZMOM (Apr 15, 2013)

Dex - Im always torn on results too.....

Oh and by the way, Im just trying to behave. I could give Dusty a run for her money. 

J.


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## Dexky (Apr 15, 2013)

Best not challenge her though!  Your thread will get moved to the adult section.


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## AZMOM (Apr 15, 2013)

Okay GI says hold all miralax report back to him in AM.


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## Dexky (Apr 16, 2013)

What's the report J?  Fingers crossed and praying for her!!


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## AZMOM (Apr 17, 2013)

No BMs since the diarrhea-palooza on Friday.  So this is day 5.  Called GI office again today.  I'm sure I'm WEARING THEM OUT.  If she doesn't go until bedtime, we'll be back to the diarrhea inducing dose of Miralax.  

But, hey, not much time to fret because tomorrow we do our scope cleanout.  That'll make her go potty.  :ybatty:

J.


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## my little penguin (Apr 17, 2013)

Sorry to hear things are not "going" well.....
Good luck on the clean out. Just make sure you start early ( constipation takes longer)


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## Farmwife (Apr 17, 2013)

Grace took two and a half days for the clean out.

Does she feel the urge to go???? Is she in more pain?


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## Dexky (Apr 18, 2013)

I hope it goes ok for her J!  None since Friday??  Wow!


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## AZMOM (Apr 18, 2013)

Dex wow is one word. Ugh. 

No increased pain complaints - just the usual. No urge to go. Bike riding and oatmeal didn't do a thing.....

Thanks for the advice MLP. The good news is that scope isn't until 2p tomorrow. So we have plenty of time to hang out in the bathroom. Lol. Im going to go ahead and give her the 1/2 dose miralax as directed this morning. Maybe we'll get lucky and she'll start. 

J.


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## Mylittlesunshine (Apr 18, 2013)

Good luck with the scope x x


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## my little penguin (Apr 18, 2013)

hopefully you have already started the prep very early this morning- it does take things a long long time but once it starts then for Ds at least the pain starts for a little bit at least.
good luck Friday


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## AZMOM (Apr 18, 2013)

She's on clear liquids today.  We aren't to start the mag citrate until 4pm.  Then dulcolax suppository at 8pm and another at 8am.


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## my little penguin (Apr 18, 2013)

REALLY- was that before the latest constipation I would CALL ASAP-
IT REALLY MAY TAKE A LOT LONGER THAN NORMAL. 
THat time frame would make me nervous


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## upsetmom (Apr 18, 2013)

Good luck with the scopes!


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## AZMOM (Apr 18, 2013)

MLP. Yes. Directions were unchanged. Maybe because her scope is 2pm tomorrow? Id be more worried if it was 9am like last time. 

Eeeeejjkkkkk!


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## Dexky (Apr 18, 2013)

I hope things are moving along J!  I'm with MLP, I think those clean-out directions are just Acra's one-size-fits-all.  They're the same ones EJ always gets and he's never been constipated!  Good luck!


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## Twiggy930 (Apr 19, 2013)

Good luck with the clean out and the scope.


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## Brian'sMom (Apr 19, 2013)

Thinking and praying for you guys today.


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## AZMOM (Apr 19, 2013)

Good news. He says that overall she looks pretty good. Two small areas of ulceration and "one little place" that was bleeding. Yes, y'all know I'll get the report. 

He thinks (and I agree) that the Uceris is helping quite a bit and we need to give it more time. 

J.


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## DustyKat (Apr 19, 2013)

Thanks for the update J and for me not having to strain my brain working out whether Claire had had the scope by now. :lol: 

So happy for you that things are looking good...:mademyday:...big time! 

As to the swearing...ya'll head down to R rated thread and we will have some fun! Rednecks versus Bogans! :lol: 

Dusty. :heart:


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## CarolinAlaska (Apr 21, 2013)

Glad to hear that Uceris is helping.  I hope he has a good plan to help her stay regular...  Did the cleanout go well?  Was she backed up?


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## AZMOM (Apr 21, 2013)

The clean out went okay. Usually by the morning suppository, she's empty but she wasn't quite empty yet. . So yeah.....she was backed up a little. 

We are going to keep doing 1/2 cap miralax and see how it goes. 

Thanks so much for checking in on us!

J.


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## Dexky (Apr 21, 2013)

Hope that keeps the C at bay J!


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## my little penguin (Apr 21, 2013)

Glad it went well....
Hope the miralax works for her to keep things moving.
It can cause stomach pain so just be aware.


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## Brian'sMom (Apr 25, 2013)

Glad scope showed she looked better than expected in there! Love that news for you both


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## AZMOM (Apr 25, 2013)

We are still trying to get the miralax thing straight but she is like a DIFFERENT KID!  

She turned 10 yesterday and we went to her fav restaurant to to celebrate. I love that she looked so happy .


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## upsetmom (Apr 25, 2013)

Happy Birthday Claire...:bdayparty:


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## my little penguin (Apr 25, 2013)

:birthday2: Claire
 Glad she is enjoying her day-

kitchen gram scale sometimes a gram can make all the difference.


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## AZMOM (Apr 25, 2013)

Party girl in action 

PS Part of the deal as they sombrero you and smear whipped cream on your face.  lol.  :ybatty:


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## Dexky (Apr 25, 2013)

That pic is so much better on here than elsewhere!!!  Is that El Maz??


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## AZMOM (Apr 25, 2013)

Ha ha Dex. Yes it IS El Maz . 

J.


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## Crohn's Mom (Apr 25, 2013)

Happy Birthday sweet Claire !

Glad to hear the scopes went well :hug:


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## DustyKat (Apr 27, 2013)

Woohoo!!!  

Happy, Happy, Happy Birthday Claire! 







Loads of love, :heart: 

Dusty. xxx


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## Twiggy930 (Apr 27, 2013)

Happy Birthday Claire!

Love the picture.


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## AZMOM (Apr 28, 2013)

I'm telling you - if Entocort hasn't helped you in the past ask your doc about Uceris.  This is a game changer for us and I didn't expect it at all!!!!!

Thanks for the birthday wishes .

J.


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## Dexky (Apr 28, 2013)

Game changer!!!  Woohoo Claire!  Woohoo J!!


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## Brian'sMom (Apr 30, 2013)

Absolutely FANTASTIC!!!!!!!!!!!!!!!!!! So Happy to hear this


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## AZMOM (Apr 30, 2013)

Me too . To be fair, I think the increased MTX dose should probably get some credit too. But her teacher approached me at a party to tell me what a dramatic difference she sees. 

J.


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## Brian'sMom (Apr 30, 2013)

Is the Uceris temporary or something she'll be on for awhile?


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## Carlino (May 13, 2013)

im about to take my first Uceris pill. Currently also taking Asacol HD (6 pills at 800mg each) and 100mg Imuran. 

hoping it stops the flare up that i can only seem to get rid of for a week at a time. accidentally ate a fiber bar instead of a granola bar and ruined the past 3 weeks for me. 

anyone recommendations? take it at night? during the day? any nausea like imuran?


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## AZMOM (May 14, 2013)

Claire takes it at breakfast. She had some initial constipation but that subsided. I hope it works as well for you as it has for her!


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## Mistybear (Jun 13, 2013)

Uceris is very expensive! 1200 for 30 day supply.


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## my little penguin (Jun 13, 2013)

http://www.uceris.com/patient/savings.asp

this should limit your out of pocket cost.
most of these types of programs cover what your prescription plan does not up to a certain point.


> Offer applies to out-of-pocket expenses (copay) greater than $25. Out-of-pocket expenses greater than $25 will be covered up to $100 per prescription. If your total out-of-pocket cost exceeds $100, you will be responsible for a $25 copay plus any additional amount over $100. If your copay is already $25 or less, this offer does not apply.





WE have a similar one for DS and humira. IT makes a big difference.


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## AZMOM (Jun 14, 2013)

Exactly what MLP said! That's what we're doing - the $25 copay. I'm a big fan!!


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## Phartologist (Sep 21, 2015)

Is there anybody on Uceris covered by Medicare Part D drug coverage.... my doc wants me to take it but 90 days supply costs $900 after Part D discount!:stinks::stinks::stinks::stinks::stinks::stinks::stinks:


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