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MLP - I haven't worried much about the lidocaine. We have to get through one more loading dose (the big one) and then it will only be every 8 weeks. I'm figuring with everything else she's tolerated - a 10 sec (at the most) burn every 2 months will seem like child's play. Seems sad, right???? J.

Mine always seem to "note" the ulcers but noone gets to excited. Now that said, she's never had more than 4-5 at the most. I feel bad for Brian. :-( Let us know!!!!!!!!!!! Hugs, J.

Momoftwo - We are just a few days past 4 weeks of EN with ng tube. It was drama and tears to start with. Now, things are going well. We have the tube in and her hooked up in minutes. Literally. And we can tell a BIG difference!!!!!!!!!!!! If he won't drink it, think about it and maybe get...

I don't have fistula experience but when anything is new, different, weird, concerning, I think calling the doc is good. If nothing is needed, you get peace of mind. But if something IS brewing, you definitely want to head it off at the pass if you can!!!!!!!!!! :ghug: J.

Not sure when he is supposed to leave. Could you call the doc tomorrow? Maybe short course of steroids to get him through the trip (if there's enough time for them to kick in?)? I agree though that normal labs does not guarantee no disease activity. :( J.

Call the doc!

:(

Maya - it must since Claire rarely says MTX burns and we are 2 for 2 on it burning (Stelara). We were never offered an IV infusion option????? J.

Maya - it must since Claire rarely says MTX burns and we are 2 for 2 on it burning (Stelara). We were never offered an IV infusion option????? J.

Great thread. Claire's 11. No remission here. Lots of her friends are obviously headed down that road....Claire hasn't showed the slightest sign of a any changes yet. J

Claire had Stelara #2 tonight. Praying!!!! Maya142 - Claire says to tell your sweet girl IT BURNS. She was furious but she was tired. Usually an ice pack makes her happy but it didn't. All that said, it hurt less than 10 seconds. But I did want to tell you that Claire says it burns. J.

Claire had Stelara #2 tonight. Praying!!!! Maya142 - Claire says to tell your sweet girl IT BURNS. She was furious but she was tired. Usually an ice pack makes her happy but it didn't. All that said, it hurt less than 10 seconds. But I did want to tell you that Claire says it burns. J.

Momtotwo - I'm sure there's a more complicated answer than this but to me, best prevention is smacking the damn disease into remission. It's like the Wizard of Oz movie..........I feel like the farther we travel down the yellow brick road (and oh the flying monkeys! :rof:), the farther in the...

So glad she's enjoying it!

Agree with Clash. Lab work is an indication of what is going on systemically. Fecal Cal is only what is going on in GI tract. We've had good labs, terrible fecal cal and seen scope results consistent with the fecal cal. lenny - we aren't trying to make you worry more!!! Just sharing honest...

Well the Uceris releases differently. She did not do well on Entocort because it didn't have the prolonged release across the colon. Her GI wanted to try Uceris because the release was different (laymen's terms). It did make a difference for my daughter and she had a dramatic improvement.

Same question on maintenance med. My personal two cents and from all the folks that are "old timers" on this forum is that Pentasa alone, won't control the disease. I hate that he's been feeling bad! A short course of steroids while you figure it out might not be a bad idea???? J.

Well said Tesscorm. We aren't veterans but I cannot imagine getting Claire to drink enough shakes to get to the 1200 ml volume she's getting overnight! She hated the tube for about a week. Now, no biggie! I'm quite certain she could put it in herself but we aren't "there" yet. She does take...

I have not used the pen but I LOVE this news!!! J.

Cheryl - I hear ya. Claire is the first at Vanderbilt children's. I am not 100% confident that the entyvio (vedo) eliminates the PML risk based on what I've read. Read the two paragraphs before the FDA medwatch #. http://www.fda.gov/newsevents/newsroom/pressannouncements/ucm398065.htm Now...