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Crohn's Disease Forum » Parents of Kids with IBD » More Little Pilgrim's Progress


 
01-16-2017, 02:55 PM   #61
Maya142
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My kiddo also vomited on MTX despite Zofran. It does happen - there are some kids that just don't do well on MTX. We tried EVERYTHING to make MTX tolerable for her - we even tried 4 different doses, but none of it worked.

Given her history of pancreatitis, I'm glad you called the doctor. I hope they get back to you soon.

If it isn't pancreatitis, maybe decreasing her MTX dose might help.

I looked up pancreatitis with MTX and drugs.com lists it as an uncommon side effect (0.1% to 1%).

Sending hugs !
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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
01-16-2017, 03:04 PM   #62
my little penguin
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https://www.ncbi.nlm.nih.gov/m/pubmed/25791546/
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01-20-2017, 10:15 PM   #63
Pilgrim
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Tonight she had her injection. We were told to up her folic acid to 2mg on the days she takes it. We were also told we could split her injection and do two smaller injections. We didn't try that. Has anyone split doses with injections?
I mentioned my concerns about a repeat of acute pancreatitis and while the nurse was dismissive she didn't think it would be a problem adding it to labs next time.
If she has any pain tonight I'm taking her to emergency to be evaluated.
01-20-2017, 10:19 PM   #64
Maya142
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Yes! We have actually done that with both pills and injections.

We've even done injections (two smaller doses) on consecutive days for my younger daughter.

Unfortunately, it did not work for her. MTX just made her too sick - extreme nausea, vomiting, dizziness that lasted two days.

We were able to stick with it a while by reducing the dose (we started at 25 mg, went down to 15 mg).

Upping folic acid did help her though. We gave her 2 mg daily.

Leucovorin might be another option - you'd have to ask specifically about that. GIs tend to use it less than rheumatologists.

We were also told Benadryl might help with nausea. Not really sure it did, but we'd give it to her at night with the injection. She certainly slept through the night with it.
01-20-2017, 10:21 PM   #65
my little penguin
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Does she take daily folic acid as well?
Ds takes 2 mg of folic acid every day including shit days
1 mg in the am and 1 in the pm
We were told if he did pills we would have to give them over two days (only at 25 mg not the lower doses )
Never told to split the shot into smaller doses
Can you ask the doc about giving leucovorin ??
It really helped Ds at least with some of the injection side effects .

Hope things go well
Fingers crossed
01-20-2017, 10:23 PM   #66
my little penguin
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Benadryl is known to help with nausea for other things not just mtx
It given her age and size I would ask the doc first .
01-20-2017, 10:24 PM   #67
Maya142
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With the injections, we tried 12.5 mg injection in the morning and one in the evening (total of 25 mg). That did not work at all - then she was just nauseous all day.

So then we tried two consecutive nights - Friday and Saturday. That was a little better.

We were pretty desperate to get her to tolerate it since it helped her joints so much.

Edited: Yes, definitely check with your doc about Benadryl. I'm not really sure it did much besides keeping M from waking up at night.

Last edited by Maya142; 01-20-2017 at 10:25 PM. Reason: Add info
01-20-2017, 10:39 PM   #68
Pilgrim
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MLP she was taking 1mg of folic acid each day and now upped to 2mg. I will ask about Leucovorin next week if this isn't better.
Maya I will also ask about doses split and 24 hours apart. She "doesn't mind the extra needle" if she feels better-from the mouths of babes.
Benedryl. I'll ask about that too. Thanks to both of you.
01-20-2017, 10:42 PM   #69
Maya142
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The other thing I'd ask if reducing the dose might be an option, if splitting the dose into two shots does not work.

She is one tough kid!

Good luck - I hope H feels ok tonight .
01-20-2017, 10:44 PM   #70
my little penguin
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Oh and for ds folate works way better on side effects than folic acid
His system for whatever reason tolerated pills well but not shots at all

Hugs to you and her
01-22-2017, 07:22 PM   #71
Farmwife
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Grace didn't mind the needle either but she tired humira first.
Sooooo........ anything compared to that was a cake walk.

No advice, she tolerated mtx well.

Hugs
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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
01-22-2017, 07:46 PM   #72
Maya142
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How did she do with the shot this week Pilgrim? Any side effects?
01-22-2017, 10:17 PM   #73
Pilgrim
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How did she do with the shot this week Pilgrim? Any side effects?
She did much better! She had taken the extra folic acid on Thursday and the shot was Friday. She woke up in the morning and she was so happy and relieved not to have vomited in the night. We had six weeks of nausea and vomiting on the weekends of mtx. This was the 7th week.
She was tired the day after but she said she could "live with it".
01-22-2017, 10:19 PM   #74
my little penguin
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So glad it went well and the extrafolic acid helped
01-22-2017, 10:20 PM   #75
Maya142
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SO glad !! I hope she does even better next week.
01-23-2017, 12:27 AM   #76
pdx
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I'm so happy to hear this!
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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
01-23-2017, 04:16 PM   #77
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01-23-2017, 11:33 PM   #78
Mehita
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Woohoo!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
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