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Uceris

AZMOM

Moderator
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.
 

AZMOM

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

J.
 

AZMOM

Moderator
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.

:(
 

DustyKat

Super Moderator
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:
 
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 :)
 
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?
 

AZMOM

Moderator
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.
 
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.
 

my little penguin

Moderator
Staff member
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 ;)
 

my little penguin

Moderator
Staff member
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....
 

AZMOM

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

FW - I remember Graces constipation issues!

J.
 

AZMOM

Moderator
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.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Never any experience with constipation. There were times I prayed for a little C but alas, no! Is Claire still hurting?
 

AZMOM

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

DustyKat

Super Moderator
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
 

AZMOM

Moderator
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?
 
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!
 

DustyKat

Super Moderator
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
 

my little penguin

Moderator
Staff member
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.
 

AZMOM

Moderator
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.
 

my little penguin

Moderator
Staff member
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.
 

AZMOM

Moderator
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 :( :( :(
 

AZMOM

Moderator
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.
 

AZMOM

Moderator
Another screeching halt :poo: 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:
 

my little penguin

Moderator
Staff member
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.
 

my little penguin

Moderator
Staff member
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
 
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!!

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
 

CarolinAlaska

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

Dexky

To save time...Ask Dusty!
Location
Kentucky
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!!:)
 

AZMOM

Moderator
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.
 

AZMOM

Moderator
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.
 

my little penguin

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

AZMOM

Moderator
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.
 

my little penguin

Moderator
Staff member
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
 

AZMOM

Moderator
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.
 

my little penguin

Moderator
Staff member
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
 

AZMOM

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

Eeeeejjkkkkk!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
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!
 

AZMOM

Moderator
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.
 

DustyKat

Super Moderator
:):):):):):)

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:
 

CarolinAlaska

Holding It Together
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?
 

AZMOM

Moderator
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.
 

AZMOM

Moderator
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 :).
 

AZMOM

Moderator
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.
 

AZMOM

Moderator
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.
 
Location
Chicago
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?
 

AZMOM

Moderator
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!
 

my little penguin

Moderator
Staff member
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.
 
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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