Methotrexate timing/side effects

[Chronsmommy]

My D11 had been struggling with ongoing fevers on Humira. It just wasn't quite working. Her GI sent us for a second opinion at a children's hospital with an IBD clinic. The new doctor is moving her Humira intervals from 2 weeks to every 10 days, and adding in Methotrexate tablets once a week. (All of which seems like the right move considering what I've read on this board.)

She's supposed to start the Methotrexate this week and the doctor says many patients like to take it on a Friday night since it can make kids tired the next day. He also says to take the pills right at bed time because it can make some kids feel naueous. She's starting with 5 mg the first week, blood work on day 6, and moving up to 7.5 the next week as long as the labs come back okay.

Is that what you've found if your kiddo is on Methorexate as well? That they are tired the next day? Is the nausea tolerable?

I post sporadically on this board but have found it so helpful in navigating my daughter's Crohn's! Thanks to all the parental experts.

 

[Pilgrim]

Hello! I hope the treatment change works wonders. I have 2 kids with Crohn's who have been off and on MTX with biologics (Humira). My daughter restarted Mtx again about 2 months ago and it followed the same pattern for her both times. First week or 2, no real issues followed by 4-5 weeks of night waking with nausea. Each week the waking time and duration is later and shorter. By 7-8 weeks no more night waking or nausea. It's a waiting game. Fatigue for her is pretty consistent.
We have always chosen Friday so that she can feel ok for Monday. It's complicated by Humira though, as we have to keep the injections 3 days apart. Not sure which drug tires her out more!
Anyway, your daughter should adjust to MTX in a few months. We put a bucket by the bed....just in case.
We have to give it by injection right now, but in the past we have used pills and it seems easier, but I know other parents here have found injections more tolerable. Probably depends on the kid.
This is a great forum. I have depended on it for advice and commiseration for....the past 6 years or so. Glad you are posting!

 

[Chronsmommy]

Thanks Pilgrim. Glad to have some idea of what to expect even though I know every kid is different.

Why do you have to keep the Humira and MTX 3 days apart? Since my D is now on every 10 days it would overlap every once and a while (and would with the second dose of MTX this month if I start her this Friday).

 

[Pilgrim]

Our GI thought it would be easier for her liver to process the medications if there was a space of 3 days. She doesn't have liver issues so I guess it is a general recommendation.

 

[Pilgrim]

I would ask your GI if you should be concerned about it. Fortunately, your daughter is starting at a low dose of Methotrexate so you will see if the liver numbers change gradually.

 

[pdx]

My daughter has been on Remicade with mtx for more than 5 years. Mtx really helps her; we took her off it for 6 months in the middle of that time and her Crohn's got much worse. It's been better ever since she's been back on it.

The timing we use is exactly what you listed--Friday at bedtime. My daughter has a little nausea and fatigue that night and into the next morning, but it's not that bad. If she has something important happening on Friday night or Saturday morning, we move mtx to Saturday night. We sometimes do Remicade on the same day as mtx, and it hasn't been a problem. We've always let her sleep in and use her iPad in bed the next morning.

She takes a Zofran tablet 2 hours before she takes the mtx, and she also takes 2000mcg of folic acid every day to help with nausea.

My daughter used to be terrified of shots, so she was on oral mtx for the first 3 years. At some point she was flaring a little and our doctor suggested that injecting the mtx might be helpful since it's absorbed better. My daughter was willing to try it, and she found that the injection was pretty easy (we use a TINY needle), and that it left her less nauseated. So we've done the injection ever since. Some kids find that the injection causes more nausea though, so starting with oral seems like a good plan.

E's mtx dose has been 15 mg/week from the start, and she hasn't had any liver issues thus far.

Good luck--I hope the changes work well for your daughter.

 

[my little penguin]

Ds has been on mtx for 8 years
First shot by itself / then pills woth humira then shot woth humira and later pills with humira now Stelara

Ds does better with pills than shots
Shots he gets a lot of side effects flu like symptoms
Nausea pain etc...
Pills at max dose of 25 mg same side effects
At 20 mg very little side effects
We do not separate the mtx from the Stelara
Never separated from
Humira either
At one point he was in humira every 5 days so we couldn’t separate
The only thing we try to separate is the biologics Ds is on (two of them ) by at least 12 hours.
mine biologics was guven daily (years ago ) and humira every 5 days so impossible to separate everything

no liver issues in almost 8 years of mtx

Ds takes mtx for arthritis not Crohn’s
Stelara is for arthritis and crohns

 

[Maya142]

My kiddo has been on the shot and pill. The first few times we tried MTX, she really struggled with nausea and dizziness. But currently she's on the injection, 15 mg per week (tiny needle, she does the shot without even flinching) and is doing ok with it. She takes it on the weekend since she tends to be a bit tired the next day but no other side effects for her this time round. We found she tolerates the shot better than the pill, but that's pretty individual.

 

[polly13]

Lucy was on methotrexate for about 5 years, after about the 6/7 weeks she tolerated it fine. They took her off it at one stage but had to reintroduce and same story settled and tolerated well after few weeks. Always took on Friday night to allow side effects to pass in time for school on monday. Hope it works for yoy

 

[cre]

My D11 had been struggling with ongoing fevers on Humira. It just wasn't quite working. Her GI sent us for a second opinion at a children's hospital with an IBD clinic. The new doctor is moving her Humira intervals from 2 weeks to every 10 days, and adding in Methotrexate tablets once a week. (All of which seems like the right move considering what I've read on this board.)

She's supposed to start the Methotrexate this week and the doctor says many patients like to take it on a Friday night since it can make kids tired the next day. He also says to take the pills right at bed time because it can make some kids feel naueous. She's starting with 5 mg the first week, blood work on day 6, and moving up to 7.5 the next week as long as the labs come back okay.

Is that what you've found if your kiddo is on Methorexate as well? That they are tired the next day? Is the nausea tolerable?

I post sporadically on this board but have found it so helpful in navigating my daughter's Crohn's! Thanks to all the parental experts.

Yes. However, my son has gone back and forth between pills/injections/liquid because of the nausea. I would also suggest giving pills before bedtime, my son could sleep through the nausea. Methotrexate does make him a little more sleepy the next day and definitely gives him less appetite the next day, but for him it isn’t anything too extreme. We began injections because he wasn’t absorbing methotrexate as well as we hoped. The injections helped with his Crohn’s symptoms but definitely made the nausea worse, we can count on throwing up about 5 hours after the injection.