Methotrexate

[Crohns dad]

Will any of you with experience talk to me about this drug. My son’s doctor is talking about adding it to Infliximab (10mg/kg/6weeks) and I just learned that it’s actually a chemo drug.

He had his 1st infusion at 6weeks instead of 8 this month. His Infliximab level was 27, his sed rate had dropped from the upper 30’s to mid 20’s and his Calpro dropped from over 3000 to just over 2000 but his iron is very low still. He’s taking iron liquid at night now.

The options offered were keep doing what we’re doing or add methotrexate. So naturally I’ve been reading about it. We really wanted to talk about changing to a new biological since it seems to us he has failed Infliximab (been on it since 2021 and never reached remission) but he’s only 10 so his doctor advises not doing that now since there are limited options.

My wife did Chemo last year for CRC and knows very well how bad that made her feel so methotrexate is kinda scary.

 

[Pangolin]

I know this is slightly off topic, but if the inflammation is focused on one particular area or if there's some narrowing/stricturing, surgery can be very helpful.

 

[Crohns dad]

Honestly don’t know the answer to that. He had scopes last August and scans that Oct. The clean out was poor for the scopes but what they could see was healthy and the scans came back normal. His Calpro was over 2000 then. We do know when he was diagnosed the inflammation was in his small intestine.

 

[my little penguin]

So the dose of mtx for chemo is astronomical compared to the crohns dose when using as dual therapy .
Juvenile arthritis kids use it a lot .
My kiddo has been on mtx for 10 years
First mtx plus humira (he was dx with crohns and juvenile arthritis)
Then when humira stopped working
He was placed on Stelara plus mtx .

some kids do better with pills
Some with injections
My kiddo was miserable on mtx injections
Flu like symptoms for 6 days
Then it was shot day again
Pills the docs had to find the sweet spot
High enough dose to help his arthritis
But not so high that he was nauseous every day
He takes folic acid every day as well
The max dose for anyone is 25 mg once a week
Split dosing helps with symptoms of nausea
Folic acid helps
My kiddo can’t take more than 20 mg or else symptoms are not the best
But mtx does boost up the biologic
So worth a shot
Most don’t get or feel sick till a few doses (weeks ) after starting
Taking at night helps
Zofran can be given
It stops the nausea but can cause constipation

ask away
My kiddo was 7 at dx
Now 20
There is a light once you get the right med combo
Everyone is different

sounds like you need a second opinion
At another hospital
Those always have helped us
Good luck

 

[WindingRs]

We really wanted to talk about changing to a new biological since it seems to us he has failed Infliximab (been on it since 2021 and never reached remission) but he’s only 10 so his doctor advises not doing that now since there are limited options

Remicade did not work for our son either. No antibodies, enough medicine levels in his body, and still inflammation. His doctor recommended change of medicine. This was 1.5 years ago, and he was 16. I had the same concern about limited medicine choices, but his doctor was not as concerned. He said many new treatments are in the pipeline. We switched to Skyrizi and he responded very well to it. For months, i was not sure if i made a right choice. I was anxious every time waiting for test results. So i totally understand your feeling. Just want to say whatever direction you decide to go, things will be a okay.

 

[Maya142]

Honestly, MTX when given for chemo is given in MUCH higher doses. It's not considered chemotherapy at the doses used for autoimmune arthritis and IBD. The doses are tiny compared to the doses given for cancer.
MTX is a very safe drug. It's been used in the arthritis world for a long time, and is given to toddlers with juvenile idiopathic arthritis - and it's SAFE to give them it and it does a good job of protecting their joints from damage from inflammation. Both my daughters have juvenile idiopathic arthritis (JIA) and the younger one has Crohn's too. They are both on MTX.

MTX has several uses. It can be used therapeutically, to control the Crohn's. But it can also be added to a biologic to prevent your child's body from making antibodies to the biologic. It increases the drug level of Infliximab (and other biologics) which makes the biologic more effective. So it has a LOTS of benefits.

Yes, kids can have side effects from it. Most common are nausea and fatigue. Also common are mouth sores, dizziness, headaches, mild hair loss. MOST kids tolerate it without many issues. There are many things you can do to PREVENT side effects including:
1) Taking folic acid daily (if necessary the dose can be increased if the child is still having side effects)
2) Taking Zofran before taking MTX to prevent nausea
3) Taking MTX at night so your child sleeps through side effects

All those things worked for us to some degree. My daughters also did MUCH better with the shots than the pills. My older daughter has only had mild nausea and fatigue with MTX and she's been on it 14 years or so! She takes 17.5 mg weekly. My younger one had a harder time in the beginning - she had mouth sores, so we increased folic acid and she never had them again. But she did struggle with more severe side effects as a teen and eventually stopped MTX, even though it worked very well for her. She re-tried it as a young adult and now has no side effects at all! No idea why it changed. She's been on it for years now with no side effects and takes 15 mg weekly.

The shots are done with an insulin syringe so they're not at all painful. My younger daughter started injecting herself at 13.

My girls have been on many biologics, so MTX is vital for preventing antibodies so they don't run out of drug options.
It particularly makes sense with Infliximab because kids are most likely to form antibodies to Infliximab since it's made from mouse protein. And having antibodies does increase your risk of allergic reaction.

All that said, I agree you should get a second opinion. I know your son is young and there are limited biologics approved for kids, but many are now used off-label for kids. You could try Humira (which is approved for kids) or several newer biologics that are used off-label - Stelara, Skyrizi, or Rinvoq. Entyvio is sometimes used but it's better for colonic disease vs. small bowel disease.

 

[Maya142]

I also wanted to add - they can still increase your son's frequency of infusions - 10 mg/kg every 4 weeks is an option. Have they checked for antibodies? It sounds like his Remicade level is definitely high, but sometimes if there are antibodies present, you want it to be higher than normal.

Have they offered him iron infusions? My daughter has needed them many times and they always make a huge difference to her. The first time, her Ferritin was very low and she was just so pale and exhausted all the time. After like two infusions, she was back to being a normal teen! She had a lot of side effects with oral iron - we did the liquid and the tablets - and her Ferritin kept dropping anyway. So we did infusions. They're easy to tolerate and generally not very long, depending on the type you are given. Have they also checked his B12 levels?

 

[braveheart]

My 11yo kid was on Infliximab and added injectable Methotrexate once a week. No side effects so far.