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Crohn's Disease Forum » Parents of Kids with IBD » New MTX side effect?


09-27-2016, 06:11 AM   #1
polly13
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New MTX side effect?

Hi there, wondering if anybody had a similar experience. About two weeks ago one side of Lucy's upper lip appeared swollen, so initially I though that she had just knocked it or that she had bit it, however roll on two weeks and it is still swollen - I have given her piriton incase it is an alergic reaction to something in her environment but no improvement - went on Dr google last night and it appears swollen lips can be a side effect of MTX - has anybody experienced this?

She is on Humira aswell and given the potentially serious side effects of these drugs, I have made an appointment with the GP for later this week, incase there is anything more sinister going on, we also see the GI in a couple of weeks - am freaking out a little - which isnt really like me but this one has me worried.
Many thanks
P
09-27-2016, 07:05 AM   #2
Clash
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Is her CD in remission? Sometimes, CD can be found there, oralfacial CD. A common symptom of that can be swollen lips.

C has not had side effects with MTX. When first starting remicade he had a blister (swollen lip) show up on the way home from infusion but benedryl took care of it in within an hour.

Sending hugs your way!
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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
09-27-2016, 07:31 AM   #3
my little penguin
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Yeah that ^^^^^
I would assume orofacial crohns
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09-27-2016, 08:02 AM   #4
polly13
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Thanks Guys - Crohns not in remission - slightly elevated calprotectin but very minor changes on scope and no perianal disease (which was her main problem) . Have completed poo sample last week for repeat calprotectin and small bowel MRE scheduled next month, mouth ulcers were her presenting symptom all those years ago so I guess Crohns makes sense for this - hadn't thought of that just jumped straight to assumption that it was the meds.
09-27-2016, 01:27 PM   #5
CrohnsKidMom
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My son has been on MTX for more than 3 yrs (monotherapy shots first, now lower oral dose with Remicade, but we have not had a side effect like this. Any skin issues my son has tend to be cracks in the skin, or chapped, dry lips or hands. No swelling.
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09-27-2016, 03:55 PM   #6
Farmwife
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Hugs,
I concur with the council, I was also thinking oral Crohns.
Keep an eye on the lips they can get bad fast.
I believe there are lip balms that are medicated that will help with inflammation.
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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
10-01-2016, 10:27 AM   #7
kernelmom3
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A friend of mine has a daughter with oral Crohn's. She gets swollen areas on her mouth that come and go and has had to go to dermatologist to manage them at times.
10-25-2016, 11:29 AM   #8
polly13
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Oral crohns confirmed by GI today, lots of mouth ulcers developed over the last couple of weeks, on steroid mouthwash so hopefully will help and we wait to see the dentist who specialises in oral Crohns. Calprotecton 795 down from 1800 in June, she grew 3cm and lost 1.5 kegs, took bloods today to check humira levels and antibodies, mre in two weeks back to GI before end of year. Does the uncertainty ever end!!!!
11-01-2016, 09:52 AM   #9
Farmwife
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Just getting caught up.
My son had a virus that resulted in 3 huge canker sores that merged into one.
If made me think of you guys
How has it been?
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