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12-06-2016, 11:15 AM   #1
Pilgrim
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More Little Pilgrim's Progress

I received our call from GI this morning. H's fcal is down to 1200 from 1500, so still dropping - but still high.
He wants to add a therapeutic dose of MTX - 15mg injections.
Also keeping her full dose of Humira to every other week.
I thought the dose sounded high but I'm not the GI.
Bummed for little H.
12-06-2016, 11:20 AM   #2
Farmwife
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I hope it helps.
How is her schooling going?
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I'm mom to............... Little Farm Girl 8 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 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
12-06-2016, 11:26 AM   #3
Maya142
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Sorry to hear it is still so high .

MTX shots are not so bad - tiny needle and pretty painless. My daughter uses Buzzy and says she can barely feel the needle at all. As you probably know by now, most parents will do them on a Friday or Saturday night so their kiddo has the weekend to recover.

Did he prescribe folic acid for her to take every day? That will help with side effects. If she does get nauseous, then Zofran also helps.

Good luck!
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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
12-06-2016, 11:44 AM   #4
my little penguin
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For reference ds is on 25 mg of mtx every week and humira every 5 days
Ask for the mtx WITH preservatives
Those do not burn
Folate works better for ds than folic acid so you might ask about that
Ds was started on 1mg per day of folate
And now takes 3mg a day plus lecovorin on shot day to help with side effects

He was fine with 17.5 mg only 25 pushed his limit
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DS - -Crohn's -Stelara -mtx-IVIG
12-06-2016, 12:11 PM   #5
pdx
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Really hope it helps! My daughter just restarted mtx (also 15mg) last weekend, and she had no side effects at all. We give it to her just before she falls asleep on Friday night, and we give zofran 2 hours before.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, 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
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
12-06-2016, 02:08 PM   #6
Pilgrim
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Thanks! He has prescribed something for nausea, I think he said Omestrapon? I'm not sure how much folic acid as I haven't picked up the prescription yet.
He said to keep the mtx 3 days away from the Humira and we do that on Sunday. So I'm trying to decide if I should move Humira to Monday and then do mtx Friday. It makes sense as right now she doesn't experience much in the way of side effects from the Humira.
12-06-2016, 02:24 PM   #7
Pilgrim
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I hope it helps.
How is her schooling going?
It's going fairly well. She hasn't missed a lot this year so far, maybe 3 days. I think she concentrates all of her energy for school. She is very "on" in public, then at home she rests quite a lot and turns down play invitations. Like the commercial, "Never let them see you sweat."
I figure the addition of methotrexate will upset the apple cart a little.
How does Farmgirl handle school this year? 3rd grade, right?
12-06-2016, 04:22 PM   #8
Maya142
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I think that is probably Zofran for nausea - Ondansetron?

We also got the MTX shots with preservative and they don't sting at all. We started with 1 mg folic acid daily and then upped to 2 mg daily when they had side effects.

If you do the shots on Friday, then she should be fine by Monday so hopefully it won't affect school at all. Most kids who have side effects (and not everyone does) feel it the day after the shot.

My kiddos have been on anything from 7.5 mg to 25 mg, but they were much older than H when they started (teenagers).
12-06-2016, 05:25 PM   #9
Pilgrim
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So this is a thing where you can request with or without preservatives?

How will I know?
12-06-2016, 05:27 PM   #10
Pilgrim
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Another thing I am pondering. Was all the effort with a gluten-free, dairy free diet worth it? Should I just let her eat whatever? The supplements from the naturopath?
I'm having angst. (Again!)
12-06-2016, 06:32 PM   #11
Maya142
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You should be able to talk to the pharmacist and request it.

As for the diet, it's totally up to you. We go with letting my daughter eat what she wants because she lost weight on a gluten free diet and didn't get better, so it just didn't seem worth it to us.
12-06-2016, 06:51 PM   #12
Pilgrim
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I'm leaning that way. On one hand her calprotectin is still decreasing but on the other hand we're adding more meds so what's the point?
12-06-2016, 06:53 PM   #13
Pilgrim
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We were given 16mm and 13mm syringes. Can someone help me figure out which to use and why?
12-06-2016, 07:05 PM   #14
my little penguin
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http://rheuminfo.com/medications/met...t-methotrexate


Not sure on the 16 vs 13 mm syringe
We get the smallest needle size (27 1/2 gauge or 28 gauge needle ) in a 1 cc (1 ml ) syringe which gives 25 mg

The presevative free mtx is single use vial usually 2 ml and gets tossed after every injection
The mtx with preservatives can be used multiple times
But is only good in the US per the CDC for 28 days once the vial is punctured
Ds gets 2ml vials for this so they are only used two weeks


As far as diet ds only avoids what can kill him (life threatening food allergies) and what makes him physically sick -wheat
Everything else is hit or miss
If it bothers him we hold off for a while and try again in a few months


Ds does sometimes get mtx on humira day
We were told to try and separate it in the beginning so they would know which drug was causing symptoms or a reaction

Now that isn't an issue and humira has been stopped and started so many times as well as mtx ...
With humira every 5 days shot day always changes
12-06-2016, 08:08 PM   #15
Maya142
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No idea about the 16 or 13 mm syringes. 15 mg is 0.6 mL though, so a relatively small syringe should be fine. I would check with the nurse.

Are you giving the first shot at home or in the clinic?

We also got the thinnest needles - at one point we were given 30 gauge (the higher the gauge, the finer the needle) and they were so thin I was afraid they'd break.
12-06-2016, 09:16 PM   #16
Farmwife
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It's going fairly well. She hasn't missed a lot this year so far, maybe 3 days. I think she concentrates all of her energy for school. She is very "on" in public, then at home she rests quite a lot and turns down play invitations. Like the commercial, "Never let them see you sweat."
I figure the addition of methotrexate will upset the apple cart a little.
How does Farmgirl handle school this year? 3rd grade, right?
No, second grade this year.
Our girls sound like sisters.
She's tough as nails at school but with her mommy it's rest time.
But even her teacher notices the changes and has had to drop a lot of her writing work (thanks God for her 501 in school (arthritis in the hands) and her bathroom trips are taking longer.
12-07-2016, 02:55 PM   #17
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My daughter is restarting methotrexate too. Wishing your girl the best with it.
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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.
12-07-2016, 06:51 PM   #18
CarolinAlaska
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So this is a thing where you can request with or without preservatives?

How will I know?
You can ask the pharmacist.
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*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. 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.
12-08-2016, 10:37 AM   #19
Jmrogers4
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Not much help with the mtx but as far as diet we've tried pretty much all of them and we found none really helped with his symptoms and certainly did not help with his growth/weight gain. So while he generally eats pretty healthy with as busy as he is there is more fast food in his diet than I would like to see as he stops off between school, practice, work, etc. Since the remicade has worked so well for him we have not had any issues with diet.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
12-08-2016, 02:56 PM   #20
Pilgrim
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I just got a note in the mail that she is low in vit D (no surprise as we're in Canada) but that she is still low in zinc. I read somewhere that the polymeric formula could inhibit zinc absorption but she's been off of it for about 6weeks. So, maybe not. I wonder which part of the system absorbs zinc? Anybody know?
JM, I think I'm going to let her eat what she wants (she's 6 and I cook everything so it won't be terrible).A lot of parents have mentioned that diets haven't affected disease.
12-08-2016, 03:24 PM   #21
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Yeah, the only thing we still keep off the list is popcorn, sunflower seeds. He does eat nuts on occasion but sparingly and only a small amount. While he is still really skinny but then so is my non ibd kid he's not skeletal just tall and lanky.
12-08-2016, 03:28 PM   #22
Maya142
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Zinc is absorbed in the small intestine.

During intestinal perfusion of a balanced electrolyte solution containing 0.1 mM zinc acetate, zinc absorption occurred throughout the entire small intestine. However, the jejunum had the highest rate of absorption (357 +/- 14 nM.min-1.40 cm-1) compared with the duodenum (230 +/- 33 nM.min-1.40 cm-1) and ileum (84 +/- 10 nM.min-1.40 cm-1)
My daughter had to have zinc supplements at one point (also Vit. D but that's pretty common). I have no idea about polymeric formulas and zinc but I do know that all my daughter's deficiencies go away when she is getting formula regularly. She gets elemental formula (Neocate) through her tube.
12-08-2016, 03:28 PM   #23
Pilgrim
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Yeah, the only thing we still keep off the list is popcorn, sunflower seeds. He does eat nuts on occasion but sparingly and only a small amount. While he is still really skinny but then so is my non ibd kid he's not skeletal just tall and lanky.
We would leave out the nuts and popcorn too as well as cooked corn which was a problem once.
12-08-2016, 03:33 PM   #24
Pilgrim
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Zinc is absorbed in the small intestine.



My daughter had to have zinc supplements at one point (also Vit. D but that's pretty common). I have no idea about polymeric formulas and zinc but I do know that all my daughter's deficiencies go away when she is getting formula regularly. She gets elemental formula (Neocate) through her tube.
I guess it's something for us to watch then. If the level continues to drop I'll ask about returning to formula.
12-11-2016, 09:39 PM   #25
Pilgrim
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We did the first dose of MTX on Friday. She actually got excited when I injected because the shot was so easy (has Humira for comparison).
I gave her Zofran and she went to bed that night like usual. No issues.
Next day she seemed ok but went to bed at 5:30 without supper. She didn't say anything, but we found her in bed with the lights on and she slept about 12 hours.
This morning seemed fine, good appetite,took it easy today,but went to bed about 1/2 hour early (7pm).
This is normal stuff for Mtx?
Also she's been eating well since we reintroduced gluten and small amounts of dairy but her weight seems to still be slipping. Anyone have this happen?
Thanks again.
12-11-2016, 09:44 PM   #26
my little penguin
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Typically mtx for ds starts with fatigue and dry mouth 12 hours after the shot so we give the shot in the am so he can sleep all night
Also use lecovorin at the 12 hour mark and then at the 24 hour mark this helps


As far as eating and still losing weight
For ds that was prior to dx when things were out of control
He could eat 2600 cal at age 7 and still lose weight
Added in kids boost and the weight loss would stop
Eventually kids boost wouldn't work either and he was scoped and dx
Since you know she is fkaring
I would assume it's still a bad flare
Mtx takes 8 weeks to work and help
12-11-2016, 09:56 PM   #27
Maya142
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It could definitely be the MTX. My younger daughter had side effects for 2-3 days after the shot.

Sometimes kids get used to it, so she might feel better after a few weeks of shots. However, fatigue is a pretty common side effect and some kids are just very tired the day after the shot.

My older daughter still sleeps in the day after the shot and takes it easy that day. That's why she likes to do it Friday night - she sleeps through most of the side effects and is just tired the next day and sometimes a little nauseous. She has been on MTX for years now.

Leucovorin did help us too but for some reason rheumatologists seem to use it more than GI's. I don't know why. It's folinic acid and in much larger doses is used as a "rescue drug" for cancer patients on MTX (who are also on much higher doses).

I would also assume the weight loss is just from inflammation. An FC of 1200 means that there's still a lot of inflammation.

Is she still drinking Ensure/Boost? If not, could she start to keep her weight up?
12-11-2016, 10:06 PM   #28
Pilgrim
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I have hesitated to put her back on formula when she is eating so well but it is probably the right thing to do.

I will ask about the Leucovorin.
12-11-2016, 10:14 PM   #29
my little penguin
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It's not either or
You can have formula in addition to her new foods
We did breakfast then formula afterwards
So food first and formula as an extra snack
12-11-2016, 10:41 PM   #30
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We were doing 1-3 per day in addition to food but noticed when we removed it she started eating less sweet food more veggies and variety. Not impacting disease but just was nice to see.
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