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Crohn's Disease Forum » Parents of Kids with IBD » Refusing mtx injection


09-04-2014, 04:47 AM   #1
Willowcat05
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Refusing mtx injection

My son has been on mtx injection for 10 months now but on Friday he just refused to do his injection . We tried for 2 hrs to try to persuade him to take it but he was getting into a right state, he says it is making him feel as if he is dead the next day and does not want to feel like that. He is 15. Has anyone had this trouble with their teenagers taken meds? And if so how did you get round this . His ibd nurse is coming out today to try and coax him to take it.
09-04-2014, 04:56 AM   #2
my little penguin
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Is he on folic acid?
Sometimes an increase in that will help with side effects...
Also when we gave it earlier like 2-3 pm my kiddo felt better in the morning vs giving it at night .
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09-04-2014, 06:00 AM   #3
CrohnsKidMom
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I'm sure his comments are valid. I have heard of side affects like this for MTX, and that a lesser dosage can sometimes help reduce them. Is there any "wiggle room" in the dose he receives? Just a thought...
09-04-2014, 10:50 AM   #4
Maya142
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My daughter was just like this. There were tears (for hours) and she said she hated it and would never take it again. MTX did make her pretty sick - nauseous and dizzy to the point where she was in bed for two days every week.

Seeing a psychologist helped some - she did become calmer about it and dealt with it better. However, she still hated it so much that we eventually lowered the dose and when that didn't work, stopped MTX altogether.

Now since she's older, we're going to try MTX again because it really helps her joints. She's willing to be nauseous because she's so sick of being in pain.

Zofran did help her a bit. Leucovorin which is folinic acid also helped - it's sort of an antidote to MTX, used as a "rescue" drug in cancer patients. We're also going to try a higher dose of Zofran.

Good luck! MTX really is the worst. Sending hugs!
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09-04-2014, 01:48 PM   #5
nogutsnoglory
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That's tough but just try to remind them that the alternative of constantly feeling awful due to crohns is worse. Like others look into ways to minimize the side effects like folic acid and reducing the dosage.
09-05-2014, 05:20 PM   #6
Brian'sMom
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At least MTX is not like the biologics.. If you stop taking it you can still go back to it. But then you have to build back up to the theraputic levels. That's a hard spot. My son would say he's "Done"... but would eventually take it. He was more worried what would happen if he didn't.
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09-07-2014, 11:39 AM   #7
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Any change? I hope he finally chose to take the meds. When my kid has complained about the meds I have reminded her we don't want to end up back in the hospital, or worse. She has never really pushed back so I haven't had to use that much and would prefer not to. Good luck... Sending my support.
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09-08-2014, 01:59 PM   #8
Willowcat05
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Gi has changed his meds to tablet form of mtx, but has told us these might not be as effective but he is willing to give them a try.Gi is also reffering him to a phsycologist to talk through his thought and fears.
09-08-2014, 03:47 PM   #9
SupportiveMom
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I totally get it. My 13 year old has no issue with needles. My 15 year old almost faints & her anxiety gets so high she is freaking out for days before a vaccine.
09-08-2014, 11:53 PM   #10
Cosmojo
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I'll be honest, I think MTX can be worse than Crohn's...so I am no longer on it. When I first started taking MTX I would basically loose 2 days each week from not feeling well where I couldn't get out of bed at all, massive migraines, almost too weak to stand, diarrhea ect.
At least with my flare ups I could stand up, 2 of 7 days each week were lost for the first years. It made me get kidney infections all the time. It was worth it when it was getting me into remission but as a long term medication it wasn't worth it.
I get that your child is 15 but if they feel this strongly maybe the side effects are so severe that you need to switch treatment because the "pros" of treatment don't always outweigh the "cons" especially if there are other options.
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09-13-2014, 10:04 AM   #11
Willowcat05
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Well thats Jack had first lot of mtx tablets last night and seems to be fine today he had a sore tummy this morning but it passed after half hour or so. Feeling a bit tired so not doing much today so hopefully these will work aswell as the injections did .
09-13-2014, 05:50 PM   #12
DustyKat
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Sending loads of luck and hugs your Willowcat.

It certainly is a difficult age in which to navigate the whole disease/meds maze.

It sounds from your post as if it wasn’t so much the injecting that is the problem but the side effects, is that right?
If this is the case then maybe it is time for the GI to revisit his treatment plan. I know it is hard to change when for all intents purposes a med is doing its job but if your boy feels his quality of life is overly affected by those side effects and non compliance becomes an issue then the drug won’t do its job any way.

I too hope the tablets work mum and your son is able to find a treatment that both works and has him feeling on top of things, bless him.

Dusty. xxx
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09-13-2014, 06:05 PM   #13
Maya142
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My daughter actually had worse side effects on the tablets and did better on the injection. I hope that isn't the case for Jack though!
Good luck!
09-13-2014, 08:43 PM   #14
lisadc1
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Out of all the posts I have read since I have joined, I think this about your son has broke my heart the most, Willowcat05. I haven't been on that medication, and by the sound of it I never want to be. I've reflected on how I have felt since my ordeal has begun and the toll it has taken on my life, but I cannot imagine how he is feeling. Lifting him and you all up for strength in prayer and that this pill form works without all that he experienced through injection.
09-16-2014, 04:48 PM   #15
Brian'sMom
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Willowcat, This disease just is so horrible. And to happen to a kid... just bad. Give your son a hug from me. He took the tablets even tho he didn't want to. What a trooper. I really pray they work for him without all the side effects. I've heard it both ways... injection has more side effects... pills have more side effects. My son has done both. I kinda think the injections started having more of an effect on him than when he was taking the pills. As adults, I think we forget how yuck it is to get a shot...and our boys are so young!! They are so strong and admirable for just dealing with it all. Hugs and prayers sent your way.
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