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Crohn's Disease Forum » Parents of Kids with IBD » MTX + Remicade: stopping the MTX after a year?


02-12-2016, 10:30 AM   #1
pdx
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MTX + Remicade: stopping the MTX after a year?

E had her regular GI appt yesterday, and everything is going well right now. Her GI suggested that we check fecal calprotectin and Remicade levels this spring, and if the numbers are good, consider taking her off MTX. (She will have been on it for a year at that point.) This was at the very end of the appt, and I wasn't expecting it, so I didn't ask any questions. I will talk to her more in depth about it at the next appt.

In the meantime, have any of your kids done this? (that is, used biologics with an immunomodulator, and then gone off the immunomodulator)
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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
02-12-2016, 11:40 AM   #2
crohnsinct
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No, O hasn't but she needs the mtx for her psoriasis and some joint issues anyway.

There has been plenty of discussion at the recent conferences and in papers that if mtx or Imuran was added to therapy to help keep antibodies at bay then patients can stop the immunomodulator after the first 6 months.

I guess you could make the argument that she could always go back on if she needed to.
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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
02-12-2016, 12:40 PM   #3
my little penguin
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Ds won't drop Mtx with his humira since he takes it for JSpA
But he has dropped asacol with the same mind set
If the doc felt he needed it again not too hard to restart it
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DS - -Crohn's -Stelara -mtx-IVIG
02-12-2016, 01:49 PM   #4
Clash
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Same here, GI mentioned dropping the mtx after 6 mos to a year but then dxed with JSpA and when the dose was increased for that it stopped the lower back pain, not to mention wrists. So we can't drop it.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
02-12-2016, 02:16 PM   #5
CrohnsKidMom
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My son is on Remicade with MTX for 7mos now, but there's been no mention from the GI about dropping the MTX. I assumed it was a rather permanent (but is anything really permanent?!) combination.
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Son diagnosed with Crohn's March 2013, at age 8
02-12-2016, 03:50 PM   #6
Maya142
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My younger kiddo also kept her MTX or another immunomodulator but that was also for her AS. My older one stayed on MTX with her Humira because of the risk of antibodies.

I know there has been some research about only doing the combination for a certain amount of time, but curious to hear what people have been told about antibodies - does the antibodies risk go down after a year so? Just don't understand why...
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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
02-12-2016, 04:08 PM   #7
Farmwife
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We were told you shouldn't have one " without the other".
I believe it was because the antibody thing.
Grace was on Remicade plus Mtx and sulfasalazine but then switched to Imuran and Remicade.

I'm interested also to see what others have to say.
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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
02-12-2016, 06:33 PM   #8
Jenn
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We didn't do the same combo, but did drop 6mp after a year in combo with Humira. The research is mixed regarding whether to do combo - which seems to help prevent antibodies and encourage remission, but how long is combo needed after remission achieved? And weighing longterm side effect risks
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Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (20mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
02-18-2016, 10:45 PM   #9
FrozenGirl
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My GI said combo with immunosuppressants for a year and then if in remission I would go off the immunosuppression.
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Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Calcium
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
02-26-2016, 01:55 PM   #10
parentnj
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We stopped methotrexate after one year on remicade. My son has been on Remicade for 3+ years and it is still working very well.
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Son Alec 13yrs old - DX 11/2012
Remicade
Methotrexate 12.5 MG Oral & Zofran weekly
Folic Acid Daily
2000 IU Vitamin D Daily
1000 IU B-12 Daily
One A Day for Athletes

Failed - Pentasa
05-16-2016, 07:20 PM   #11
pdx
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Test results are back and they are good! Fecal calprotectin was 80. (I think it was 1800 at diagnosis.) Remicade trough level was 3.9, and no antibodies were detected. So we are going to try stopping mtx and see how it goes, knowing that we can always add it back if needed.

The Remicade level of 3.9 seems a little low to me, but if E gains 1 more pound this month, she'll jump from 300mg of Remicade to 400mg, so that will raise the level. (She's at that annoying 49 kilogram point that we were talking about on the forum last summer. 49 kg x 7 mg/kg = 343 mg, which gets rounded down to 300 mg. So she's actually been getting 6 mg/kg for a few infusions, rather than 7. And then when the dose jumps to 400 mg, she'll be getting 8 mg/kg for a while. I wish the Remicade vials came in smaller increments or that our current infusion center would split them, like our old one did.)
05-16-2016, 07:57 PM   #12
Maya142
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Hope you're able to drop it with no issues!!

For what it's worth, my older daughter has tried to reduce MTX several times - in her case, it didn't really work and she had to up her dose again. However, it worked just as well when she went back to her original dose -- no issues at all. It was worth a try (and in fact, I'm sure she will try to get rid of it again this summer ).

So if you do have to add back MTX, it should be fairly easy. Fingers crossed she does not flare and comes off it without any problems!
05-16-2016, 11:55 PM   #13
FrozenGirl
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Agreed, I hope the drop works out. Hopefully she can gain that 1 pound and then her Remi levels will be nice and high.
05-17-2016, 01:52 AM   #14
Sascot
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Glad things are looking good
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