Methotrexate- good or bad?

[bethhall3434]

How did your child handle it? Side effects, effectiveness of the drug, etc. Thanks!

 

[Maya142]

I responded on your other thread - my older daughter did great on it, and my younger daughter had a harder time. My girls did better with the injections, but some kids do well on the pills. Folic acid helps a lot.

MTX worked really well for both my girls, but we only used it in combination with a biologic.

I'll tag some more parents who have or had kids on MTX:
pdx
crohnsinct
Mehita
Clash
Jmrogers4

 

[bethhall3434]

What do you mean, combination with a biologic?

 

[Maya142]

My girls were first put on biologics - Humira first for both of them. Humira helped, but not enough. So then MTX was added in addition to the biologic. The combination of Humira + MTX worked very well for both of them.

Many doctors are using biologics earlier these days. There is the "top down" method, where the most effective drugs (biologics) are used first to get the disease under control quickly. This has been shown to prevent complications like abscesses, fistulae, strictures and reduces the odds of needing surgery.

Other GIs prefer to use the "step up" method - where they start with the mildest meds and then work their way up. So often they will start with something like Sulfasalazine or Pentasa. If that doesn't an immunomodulator like 6MP or MTX is used.

If that doesn't work, then a biologic like Remicade or Humira is used.

They are just two different methods of treatment.

 

[my little penguin]

Ds is the same
On a combination of humira AND mtx
Requires higher folic acid 2 mg a day but otherwise no issues
He does take pills

We tried injections of mtx
And he got flu like symptoms
Mouth ulcers etc
Felt horrid despite higher folic acid

Mtx by itself did not work and Ds developed
Vasculitis

 

[pdx]

My daughter is also on methotrexate + a biologic (Remicade), and does well on this combo. She takes 15mg of mtx orally once a week. We tried going off the mtx after using it for a year in combination with Remicade, and she went downhill fast. We added back the mtx and she's doing well again.

She takes 2mg of folic acid daily and a zofran tablet 2 hours before taking the mtx, and these help her with the side effects of the mtx. She also takes the mtx over the weekend, on Friday or Saturday night, so that she can sleep in the next day if she's still feeling a little queasy. Finally, we put the 6 little mtx tablets into a capsule so that she can't taste them as she swallows them.

 

[bethhall3434]

Thanks guys, this all helps a lot. Emma was diagnosed a year and a half and she has been doing ET and was also on sulphasalazine, but her inflammation levels didn't change. Her energy level and weight gain has been great though. Our other daughter was just diagnosed 1 month ago. She only doing ET for the 1st 3 months to see how it works.
Methotrexate made me nervous, so I'm glad I found this thread.

 

[Mehita]

My son is also on a methotrexate and Remi combo and doing well. He only takes 1mg of folic acid daily (I see others take 2mg). He's never had any side effects.

The only thing I've found a tad annoying is that his mtx prescription always gets flagged at the pharmacy and I have to "chat" with the pharmacist. Every. Single. Time. It's been two years!

 

[Jmrogers4]

I think my son is one of the few that can't take methotrexate, caused some issues with his lungs but as for it controlling his Crohn's it was the only thing that worked before Remicade. He is on Remicade only currently only because he can not take Methotrexate but it is working really well for him.

 

[jsmith5532]

I think my son is one of the few that can't take methotrexate, caused some issues with his lungs but as for it controlling his Crohn's it was the only thing that worked before Remicade. He is on Remicade only currently only because he can not take Methotrexate but it is working really well for him.

I hope you don't mind me asking, what issues did your son have with his lungs from the mtx?

 

[Jmrogers4]

He started coughing and wheezing and developed some slight lung scarring it's a very rare side effect, his GI pulled him off pretty quickly after the coughing started