Question about kids on MTX

[Clash]

So it would probably be more appropriate to say MTX pill form.

C has been on MTX 25mg pill form since October of last year, I believe. He has had no side effect from his weekly dose at all...zilch, nothing, nada...might as well be taking a sugar pill.

For the last two weeks he says he has D the day of the MTX and the day after. No pain, no nausea, no flu-like symptoms or fatigue...just loose stools several times that day and the day after.(He normally has a 1 bm a day to 1 bm every other day) The rest of the week all is normal.

So here is my questions:

Has anyone experienced D as a side effect of MTX?

Since C has always been on the MTX pill and I have read that the pill is sometimes not as effective due to the bowel not being able to absorb the med could it be that his bowel is finally healed enough for better absorbstion hence the reason for the D(or side effect) just now becoming present?:confused2:

Of course, this could be a sign that the CD is just becoming active and the time of the D occurring with MTX dose is just a coincidence.:yfaint:

We have a FC test coming up the week of June 6th and a dr. appt/remicade infusion on the 20th.

 

[Tesscorm]

Yeah, that is a bit odd! Considering that it happens only when he has the pill, it would seem to be related?? And he hasn't started anything else new lately that happens to fall on the same day (ie Stephen just started his ball hockey season once a week...)??? Or changed the time he takes the MTX (ie morning now instead of before bed)??

Good that you're having the FC test and an apptmt coming up!

 

[Clash]

Well, you know how it is with a teenager, dose times are dependent on when the mood strikes them or when they wake up from an all night xbox live summerfest. He had a strict dosing schedule in the beginning, same time every week but hasn't for the last few months, just after his biggest meal. But we are going to try switching to right before bed time next week and see if it helps.

No new activities or meds, he has been at his Dad's for the summer but longer than these two episodes so I'm not sure?

It stood out enough to him that he picked up his cell and called me about it which is huge for him, I'm usually nagging for tidbits of info. Also, means I probably need to back off as he seems to be aware of what changes he needs to convey to me...and nagging is so fun! HA

 

[my little penguin]

WE get that with HUmira dose and before on remicade dose.
Nothing happened with MTX at all except flu like stuff.
I refer to it as DS reset. then he is fine.

 

[Clash]

Haha MLP that is funny because a few times after remicade, like one or two days after C will get it too and that was even before he started MTX and C calls it a reset then too!

 

[crohnsinct]

Sorry no experience with D here. But I am thinking (or hoping) since it could cause GI upset maybe that is what it is? I like your bowel healed absorbing more theory. Lets go with that!

Pins and needles till FC!

 

[S mom]

We do the MTX shot, not the pills, so no experience with that but I thought I had heard of that side effect in some people who take the pill... but you just never know, everyone is sooo different.
We were just having this conversation this morning as my son said that his stomach was sore and he had been having more and looser bowel movements the past day or two... so now the conversation begins - why... could it be Crohn's acting up, could it be something he ate, could it be because he has started taking the Calcium/Vit. D supplements again, is it the MTX shot he did yesterday, is it just a bug he's fighting????? uggh. Fingers are always crossed for all of us here that it's just a "blip" that has nothing to do with Crohn's!

 

[Clash]

S mom, I know it seems like a merry-go-round of "hmmms...could it bes...I hope and I hope nots.

I hope you guys are just experiencing a blip!!

 

[S mom]

I knew you guys would all 'get it' cause you're all in the same boat - hard to explain to those not in this situation the worry you have as a parent about what for others would just be a "little thing". Crohn's lets us worry about every little thing, right?

 

[Mehita]

DS sniffled today and I just about had a heart attack. Me, worry? Noooooo... not at all. Ha!

 

[Tesscorm]

Couple of days ago, Stephen had lunch with his 'sort of' girlfriend (I'm never sure if it's on or off!) and told me after lunch - 'oh, she might have strep'... :yfaint: My immediate thought was 'OMG, did he kiss her goodbye!?!?' (isn't that terrible! :redface and then 'OMG, isn't that serious with remicade?!?!?' Have been watching for any sign... so far, so good. I guess it just never ends... :voodoo:

 

[my little penguin]

Hugs Tess
Fwiw DS had strep three times with remicade
No issues just normal abx

 

[Dexky]

Clash, I wonder if it's possible that the mtx may be losing it's effectiveness at the 2 week point and it just takes the extra day or 2 for the new dose to become effective. Maybe, they need to adjust dose or schedule??

 

[Brian'sMom]

Clash, We haven't been on pill form very long...since March...and I've just noticed in the past 2+ weeks that Brian's stools look so normal! I think he's gaining weight too. We also have had no side effects...'nada' on everything also. But I do remember loose stools day after he takes it. I just thought it was because we're just getting started and his colon was inflamed in the sigmoid/rectum area and it needed awhile to heal. DS takes his on Saturday(tomorrow)...I'll pay close attention this next time and report back

 

[Clash]

Dexy, he takes it weekly but that could be it. I am so ready for the fecal calprotectin. Sad thing is except for the day of loose stools on MTX dose day, he is doing really well. I think I am gun shy from when I called the GI nurse and said "Hey he hasn't pooped in 4 or 5 days, thinking she would say give him miralax and she said bring him to the ER. And then to have kept him, scoped him and MRE'd him now has me on pins and needles about what is serious and what isn't!

 

[Brian'sMom]

Ya! I've had that sort of thing happen to...not to that extent. But its made me think, Do I really want to open that can of worms just yet! Makes me a more, wait and see!! I called on a Saturday once and the on call doc was like, "it must be something big or you wouldn't have had me paged". It was when Brian was having side effect to Asacol...I just wanted the go ahead to stop the medicine until Monday...he talked of ER also!

 

[Clash]

Thanks Brian's Mom! Yeah, I sometimes worry about what to call about and what not to call about. We will be two weeks from the next remicade when we do the fecal calprotectin, I may do it on the day of the weekly MTX dose hmmm...wonder if that would skew the results...maybe I should do it the day before?

 

[Brian'sMom]

I struggle with when to do labs and skewing the results.(I've never been told that's a worry from GI). But I mix it up so I can see both. But I'm talking about monthly blood labs. We've never had the cal test but i'd probably do it before. Since you're wondering if the mtx is tapering off. And since it'll be before the remi also. Maybe ask the GI office how they want it done.

 

[Clash]

You are probably right, the day before the MTX, that way if it is like Dexy said and he isn not making it to his last dose we may get a representation of that. I love this forum, who else can I bounce poop collections times off of?

 

[jmckinley]

I wonder if it could be a filler in the pill. If his system is doing better and he's absorbing more, maybe fillers would bother him more too. You know Ryan had to change to the injection because the pills had lactose in them and gave him D.

 

[Clash]

I didn't think about fillers but that could be it too, hmmm... Thanks Jmckinley.

 

[Brian'sMom]

Clash, Brian didn't have any diarrhea after his mtx on sat. (Said I'd pay attention this round). Not sure if this helps since crohns is such a crazy thing disease. This could just be a side effect we didn't experience.

 

[Clash]

Thanks, C still isn't complaining of any other symptoms and swears he feels great. FC test will be sent off this week so hopefully good news from it!

 

[CrohnsKidMom]

Hi Clash, I'm coming in late in the discussion, but we are just about to start MTX shots later this week for my 8 yr old. The GI told me that the pill form is hard on the digestive tract, which makes it even more difficult for someone with Crohn's. The GI also said it can take 6 to 12 wks for the med to really take affect. Sooo, maybe the med is just now taking full affect-and giving him the negative bowel issues. I realize that's not very enlightening, but I thought I'd pass on our GI's comments.

 

[Clash]

Thanks CrohnsKidMom, our GI told us the same we have the option to switch to injections if we feel the pills aren't working or giving him bad side effects but he has been on them for 7 months with no problems. I don't know if we would change to the injection since all he has experienced was loose bms on dose day but if the fecal calprotectin comes back high we will be looking at some changes, I'm sure!

 

[Brian'sMom]

We have only been on MTX for a couple months. I really am beginning to think it is helping Brian. We also have had no bad side effects. I was so so worried we would, but its kinda strange. Its also like he's taking nothing!! Only good results in the toilet and his fissure has healed...No blood, and the rash he used to get on his butt cheeks...gone too. I'm a bit confused cause I was really scared of mtx. I wonder if when winter comes...sickness sickness. That's how it was when we were on Aza. He caught EVERYTHING!!

 

[Clash]

It didn't work that way with C he started MTX in fall of last year and wasn't overly sick, I can't remember him having anything really so maybe it will be the same for you DS Brian's Mom
I was prepared for all kinds of sides effects when we started too but C has never even felt nauseated afterward. He takes his dose tomorrow so we'll see if the loose bms were a coincidence or not.

I'm so glad it seems to be working for Brian...woohoo!

 

[CrohnsKidMom]

Clash and Brian'sMom, are your children taking a med for nausea while on MTX? Our GI has prescribed a strong anti-nausea drug to be taken along with the shot, which makes me think the likelihood of my son being really sick with this med is high.

 

[Clash]

No, C isn't. The GI told originally prescribed zofran with it but said he didn't have to take it if he didn't need to. C never had any issues so he hasn't ever taken the zofran.

He has taken his MTX today(I told him to wait til bedtime...teens) and so far no probs so it may have not been connected...we will see how the evening goes.

 

[Brian'sMom]

Clash and Brian'sMom, are your children taking a med for nausea while on MTX? Our GI has prescribed a strong anti-nausea drug to be taken along with the shot, which makes me think the likelihood of my son being really sick with this med is high.

No, but Brian is taking it orally. He takes Folic acid in the mornings

 

[Clash]

Brian'sMom, does your DS take the folic acid every day? My son does, the GI didn't specify and the pharmacist said every day. Although, I've read different px'ed protocols for folic acid and MTX from member on here. Everything from take folic acid the day of MTX dose only to take folic acid every day except day of MTX dose.

C still hasn't had any issues from the MTX today so fingers crossed the several loose bms he had the day of the last two doses was just some fluke.

 

[Brian'sMom]

Clash, Yes-Folic acid every day. I've also seen the different protocols. Our GI said to give it everyday. I'm so happy no loose bm's!! It probably was a fluke. I'm crossing my fingers too

 

[CrohnsKidMom]

Our GI has told us to take the folic acid everyday EXCEPT the day of the injection. Not sure why that is. I have my "injections 101" class tomorrow, I'll try to remember to ask the nurse... although I'll probably be too nervous to remember anything.

 

[my little penguin]

Mtx inhibits the folic acid when it works .
Although studies haven't shown that giving it the day injection makes a difference on its effectiveness but some still go with the old school thought to be safe .
We avoided folic acid the day and the day after the injection.