Crohn's Disease Forum » Parents of Kids with IBD » Heard from Doc today


 
12-19-2017, 08:38 PM   #451
pdx
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That is very interesting and makes sense to me. When we added mtx back into my daughter's treatment, we measured Remicade levels soon after, and the mtx did cause the Remicade levels to go up.

I think it is still not known what is better for long-term health: higher dose Remicade alone or lower dose Remicade + mtx. Certainly the second choice is cheaper, given the high cost of biologics. But as you said, the first choice is better if there is a chance of pregnancy or alcohol use.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
12-19-2017, 09:10 PM   #452
kimmidwife
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That is really interesting and I can totally understand about the risks of methotrexate thanks for sharing his answer!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
12-19-2017, 11:26 PM   #453
Maya142
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I think it also depends on what EIMs your kiddo has. For example, if you have a child with arthritis as well as IBD, then keeping them on MTX would make a lot of sense since it will help control the arthritis as well as the IBD.

My older daughter had good Humira levels when they were last tested - some time in the summer I think (she was on weekly Humira then). But every time she tried to wean MTX, her joints flared.

Same with my younger one - whenever we tried to take her off an immunomodulator in the past, her arthritis flared. She really does need both.

I think if you are just using MTX to prevent antibodies, then you have a better chance of being able to get rid of it. But if it is for arthritis or psoriasis or something else in addition to IBD, then MTX makes a lot of sense.

That said, my older daughter tries to wean herself off MTX pretty much yearly - especially in college when "everyone drinks!" (according to her anyway).
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-20-2017, 12:20 AM   #454
Farmwife
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But what they learned was people metabolized it differently. So there were sharp peaks and valleys of drug in their systems. The goal is to keep the drug somewhat steady and lasting the whole interval.
This was the reason for the every 2 weeks of Remicade for Grace. This is what the rheumatologist believes. I was sceptical at first if the ever two weeks would work but Grace seems to be improving slowly.
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I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
12-20-2017, 10:13 AM   #455
Jmrogers4
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Don't have much to add on the mtx since it wasn't an option for Jack when he started remicade but we have certainly played with interval and dosage with Jack, we seemed to have hit on a good regime for him right now although he was just saying he would love to move out to every 8 weeks but I think he is in such a good spot I'm reluctant to rock any boats.
Enjoy your time with O. Merry Christmas, Happy Hannakah and all :
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
12-20-2017, 11:48 AM   #456
pdx
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I think if you are just using MTX to prevent antibodies, then you have a better chance of being able to get rid of it. But if it is for arthritis or psoriasis or something else in addition to IBD, then MTX makes a lot of sense.
Great point. My daughter developed Remicade-induced psoriasis after she dropped mtx, and it's mostly gone now that she's back on mtx.
12-21-2017, 01:05 PM   #457
crohnsinct
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Forgot to mention (that's to the pm'er for reminding me). O's FCP came back normal. Lab didn't report an actual number but normal works for me...for now. Also labs from infusion all normal. So looks like steroids did their thing and hopefully Remicade keeps her there.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-21-2017, 03:04 PM   #458
kimmidwife
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That is great news!!!!!
01-10-2018, 10:59 PM   #459
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Oops! Sorry. Fecal calprotectin was NOT normal. It was actually closer to 1500. This was after 5 weeks of steroids and 6 weeks out from last infusion. O must have read the portal wrong. Blood labs were normal though and you all know how much I love those.

She was only home for 2 days. Traveling visiting family and friends the rest of the time. But we caught up with her out east for some of it.

She went back to school on Monday with lots of weird goings on. GI thinks she may have steroid induced adrenal insufficiency. Put her back on steroids. She also is going to the bathroom a lot and has some bleeding. Second higher dose and 4 week infusion is this Friday. Hoping it kicks in soon.

I think the plan is to wait another infusion cycle to determine if she is losing response or not. GI mentioned possible scopes. No clue when those might be unless he has an extra long scope that will reach across the country not likely anytime soon
01-11-2018, 07:27 AM   #460
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Well.....darn. How is she even going to be able to study like that?
01-11-2018, 10:31 AM   #461
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You got me! She went to the bathroom 18 times on Monday. She's stubborn...takes after her father
01-11-2018, 01:11 PM   #462
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I'm so sorry she's still going thru hardship.


You got me! She went to the bathroom 18 times on Monday. She's stubborn...takes after her father
And because I can't let a comment like that go by.......

Ya, her father
01-11-2018, 01:20 PM   #463
Maya142
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Poor O!! 18 times!! That's insane . Really hope her infusion puts a stop to that.
01-11-2018, 01:24 PM   #464
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18 times! had she already started class? I don't know how they do it.
01-11-2018, 01:56 PM   #465
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Started class yesterday. According to her she is fine!

I have gotten way more texts about a sorority rush event tonight and what she should wear and how she looks and accessories than I ever have about her Crohn's. The kid actually woke up early, finished a 6 minute video project and ran downtown to shop for a skirt because the one she ordered didn't arrive in time. She showered, saved her legs (sorry boys), did her nails and is ready to go to class. Gets out of class at 4:45, event is at 5!

But she can't seem to find time to walk "clear across campus" to get her hat and poop jars from the lab. PRIORITIES MOM!

Fecal ca supplies weren't the only casualty of the day...she also put off buying her books
01-11-2018, 02:29 PM   #466
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Total priorities! Have I told you about the flu shot he was supposed to get at school from the place he literally walks by 5-6 times a day! I did bring him when he was home on break took a total of 10 minutes which I commented to him about how quickly they can do them. His comment "yeah, but to be honest it wouldn't of happened" Not because he didn't know it was important just not a priority for him UGH!!!
Does she text you pictures of outfits? Jack will send me a snapchat asking if "this goes together"
01-11-2018, 08:44 PM   #467
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Wow! That is amazing that she is still functioning and living despite going through all this.
01-12-2018, 01:54 AM   #468
crohnsinct
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Jmrogers4: that is so flippin adorable! I expect it from girls but too cute when a boy asks his mom!

Farmwife: yeah I knew you would appreciate that. I slipped another one into a different thread just for you.

Tomorrow is C diff test, FCP, blood labs and infusion....hopefully O worked her way over to that terribly inconvenient medical center to pick up her Remicade! But LOL, jokes on her. The school lab only processes FCP samples Mon - Wed and she missed the Wed cut off so now she has to wake up super early to catch an uber to drop off her sample clear across town so she could get back in time for her 9 a.m. class. No time to do it after as she has infusion. Hopefully she has learned her lesson!
01-20-2018, 08:24 PM   #469
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Wow! Sshe is one strong, determined girl!! Is she having much pain?
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
01-24-2018, 12:36 PM   #470
crohnsinct
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So O got her second infusion on the new plan last Monday.

Her fecal calprotectin came back at >2500. Some labs are falling and the velocity has picked up.

Still on steroids. Now at 10 mg. GI says his priority is to get her off steroids but he is going to do that very slowly.

He also says we need to give the new dosing about 3-4 months to take affect and until her levels are optimized he would expect cal pro values greater than 1000.

He did say that in cases like this he likes to see the kids monthly but her distance is complicating that.

She was in med center Monday watching her for possible pneumonia or flu.
01-24-2018, 12:47 PM   #471
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Is there such thing as collaborative care or a GI who could provide proxy care, or telemedicine with current GI?
01-24-2018, 12:51 PM   #472
crohnsinct
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There is but there really are no doctors near her school. Nearest decent GI is 2 hours away and that wouldn't be a problem IF she had a way to get there....guess who is getting a car for her birthday....that or a transfer to a west coast school!
01-24-2018, 12:51 PM   #473
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Oh I hope flu/pneumonia doesn't rear its ugly head and further complicate matters and that new schedule works wonders and it's just a matter of allowing more time.
01-24-2018, 01:03 PM   #474
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I vote transfer. She is way too far away from her GI and family support. She sounds too stubborn to do that though!
01-24-2018, 01:43 PM   #475
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Haha she says I should transfer there!
01-24-2018, 01:46 PM   #476
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Transfer to the doc
Much easier
Even. If itís working th a few hours
Then she can get seen like the doc wants
Hugs
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01-24-2018, 03:19 PM   #477
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I vote transfer closer to home . I'm pretty sure she won't listen but you can tell her the committee has voted!

And maybe tell T that when the time comes, she should choose a college that is driving distance from her GI!
01-27-2018, 03:38 PM   #478
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Good news! Looks like O just had some weird virus thing as she got better throughout the week.

Don't ask me how her Crohn's is, I have sworn off asking since GI is set on waiting another few months. Ignorance is bliss!

T has a four day weekend coming up so we are going to fly out there to see O. Otherwise, we wouldn't see her until mid May because she is going away for spring break.

O actually asked us to come down. She has even asked if she could stay with us in the hotel for the three nights we are there. Nice how she saved me the trouble of asking her!

I will let her know the forum consensus on the transfer!
02-11-2018, 11:26 PM   #479
crohnsinct
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Well, we saw O last week. She looks good. Tired but good. She was going to the bathroom about 10 times when she was with us so I imagine a bit more than that over an entire day. But no blood so we are making progress. Tapering to next level of steroids starts tonight.

She was supposed to have her infusion tomorrow but once again her flaky home infusion nurse can't make it. They had to reschedule to Thursday. I texted her that I was miffed at him and that I recently read that a delay of as little as four days for infusions could risk falling out of remission.

Her response?

"well then, good thing I am not in remission".

LMAO! The kid has an answer for everything! Oh yeah and she vetoed the committee vote to have her transfer. She wants to stay another year. But we did get her to concede that she would miss some of her her spring break trip to come home and have scopes IF the GI asks her nicely AND IF he agrees to do it on a Monday to Friday so she could either fly home later in the week OR come home and then meet her friends after scopes. This was actually a committee members suggestion! I let her think she came up with it.
02-12-2018, 07:45 PM   #480
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Glad you got to see her, and I hope the steroid taper goes well.
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