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01-08-2013, 11:40 PM   #1
Supermom
 
Join Date: Jun 2012
Location: Kansas
Methotrexate

After a second opinion and a third colonoscopy, our new doctor is really considering adding Methotrexate to my 12 year old's list of medicines. He is currently taking Remicade and Colazal.

Can anyone that has a kiddo on Methotrexate tell me your thoughts and any side effects to be aware of?

Thanks!
01-08-2013, 11:48 PM   #2
Crohn's Mom
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I'm sorry your childs having such a hard time

I don't know anything about MTX, but here is a link to our treatment sub forum for it ~ maybe you can find some helpful info there ?


http://www.crohnsforum.com/forumdisplay.php?f=88
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DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
01-09-2013, 12:04 AM   #3
Clash
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Hi Supermom, my son is on Remicade and MTX, his CD is located at his terminal ileum. He did great during the loading doses of Remicade, all the symptoms were gone. Then when we started the regular doses he couldn't make it past 4 weeks before the symptoms would return. We first upped the dose then tightened the schedule to 6 weeks but he would still flare so we then added MTX. He takes it in pill form, 10 pills every Friday. The GI told us to take it on Friday as some experience flu like symptoms after taking it and that would give him the weekend to recoup. He has been taking it for 12 weeks now and has experienced no side effects, so far. Also he is experiencing no CD symptoms.

I have read that many do better with the injection instead of pill form when it comes to side effects. Jmckinley also has a son that was on the remicade/mtx combo but he had a reaction to the Remicade and I think she is now on just MTX, I think. Maybe she will be by with their experiences.

Also since adding the MTX the GI had us add folic acid too as I think MTX is a folate antagonist, but you can probably read more about that in the wiki forum under methotrexate.
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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
01-09-2013, 02:07 AM   #4
Scaryman
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Be warned it might make him tired as well. I passed out once due to it, but don't be scared cause of my reaction. I'm hyper sensitive. I had a reaction to imuran the best GI couldn't make sense of...so.

Mtx assists in making other drugs stronger.
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Diagnosed 2003
5-ASA- failed
Imuran-failed with a strange reaction-paralysis
Remicade- failed with infusion reaction.
Mesalamine-another failure
Entecourt - fail- no help.
currently on Methotrexate 25mg and Humira combo.
Folic Acid Supplement
Hyclosomine,Ultram,vicoden for pain as needed
Extended right Hemocolectomy 5/24/13 Univ.Of Chicago
11/7/13- small crohns ulcer at surgical site (active).
01-09-2013, 03:36 AM   #5
Sascot
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No experience with Methotrexate, but hope it does the trick and helps get your kiddie into remission. Have you tried EN at all? There are others like Crohnsinct that have used the EN to help boost the efficiency of Remicade. At least it has no side effects although hard for the kids to do.
01-09-2013, 02:08 PM   #6
S mom
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My son has been on Methotrexate for about a year and a half now. He did really well on it for about a year but it has stopped working these past few months So... maybe we'll be adding Remicade!
As far as side effects... he didn't really notice anything except for one week earlier on when he forgot to take enough folic acid - then he was a little nauseous and tired... never had that problem again. I think he lost a little hair in the first few months but then it seemed to grow back - no big deal.
He has taken it by injection and has learned to do it himself at home without problem.
It's too bad that it's stopped helping but it was great - it bought us a year or so worth of 'remission', I think!
And, I think there are quite a few kids on the forum who have had some success with that combo of MTX and Remicade.
I hope it works for your guy too!!
01-10-2013, 08:50 AM   #7
jmckinley
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Hi Supermom. My son is on Methotrexate only right now. Like Clash said, he was on remicade and methotrexate together but had an allergic reaction to the remicade. Now he takes methotrexate. It is working well for him at the moment.

He took the pills the first few weeks, but he developed a rash and stomach ache. I discovered that the pills are filled with lactose and Ryan is lactose intolerant. That made it very hard for him to take the pills and he wasn't absorbing any of the meds. Now we do the injection every Saturday afternoon. That gives him the weekend to recover. It makes him tired and moody for 2 days. Also, the shot makes him nauseated so he takes a zofran right when he gets the shot. He also takes 1000mcg folic acid every weekday, but not on shot day or day after.

I have been happy with the methotrexate. I hope that it will work for you. Kids can do the shot themselves if they aren't too squeamish. The shots are subQ with an insulin syringe. Let me know if you have any other questions!

Thanks Clash for leading me to this!
01-10-2013, 02:04 PM   #8
Supermom
 
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Location: Kansas
Thank you all so much for the replies! It is so nice to hear stories from other families. My son should be starting on the Methotrexate soon. He is having a very hard time so I hope this alleviates some of his pain. Never fun watching your kiddo go through pain
01-10-2013, 02:58 PM   #9
S mom
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Good luck, sending positive vibes your way!
01-10-2013, 04:30 PM   #10
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Hi! My daughter was just on MTX for three years. Right now she is on Remicade + MTX. During the first year she was on MTX injections, no side effects...just crying before each shot. Then they changed it to a pill (to be honest I have no idea why - I was happy that Kasia wouldn't be crying anymore) and then she started being really sick the next day after the MTX (about 12 hours after). She also had huge problems swallowing the pill (the smell, the size). We came back to injections and after a couple of months the side effects were gone (crying was back!). We give her Folic acid before and after and Dramamine right after MTX and she is a bit tired in the evening (Dramamine) but perfectly fine in the morning. Unfortunately her blood tests showed that MTX alone was not enough so they put her on Remicade and continued with 15mg MTX with a future plan to cut it down to a smaller dosage.

Good luck to your son!

Ania
01-10-2013, 04:34 PM   #11
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[QUOTE=jmckinley;569942]Also, the shot makes him nauseated so he takes a zofran right when he gets the shot. He also takes 1000mcg folic acid every weekday, but not on shot day or day after.

It is interesting with this folic acid. We were told to give her folic acid 24 hours before and 24 hours after MTX...

Ania
01-10-2013, 07:06 PM   #12
Mom2oneboy
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My son is on Remi and MTX shots. He had a little nausea after his first full dosage shot that zofran took care of and hasn't had any problems since. He gets it weekly right before bedtime. It depletes the folic acid so it's important that they take a supplement which he takes daily except for shot day and the day after.

Good luck....let us know how it goes.
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Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
01-10-2013, 09:22 PM   #13
AZMOM
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Claire's on MTX I injections.....about 18months now. We do the shot on a weekend night. Sometimes she has a slight headache but usually relieved with Tylenol on the occasions she has one. Really no other side effects other than a little tired the day after.

Hugs,

J.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
01-11-2013, 02:50 PM   #14
jmckinley
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Good luck with the methotrexate. I can say that it is wonderful for us! We can definitely manage its ill effects.

Aniuko, I know. Dr's all have their own ideas about what works! I did see a study somewhere that gave the recommendation of our GI. Not sure which actually works best.
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