Methotrexate??

[lcpalmer]

My 12 year old was diagnosed in August due to lack of growth and frequent bowel movements. We started him on prednisone and he immediately began to put on weight/grown/have more energy. When that finished off, we started nutritional therapy (he drank 6-7 pediasures a day along with a low residue diet). He continued to grow and his labs looked great. However, after having a MRE, it showed that the inflammation was still there. We then started 6mp After a couple of months on 6mp, it was discovered that his liver enzymes were rising so the doctor wanted us to stop that immediately and switch treatment plans. We are given the option of methotrexate, Remicade, or Humira. I'm leaning towards methotrexate because I just think the infusions (Remicade) would be very hard on him emotionally. Has anyone had good success with methotrexate after failing with 6MP? (Please say yes!)

 

[my little penguin]

Ds failed 6-mp similar to your child
Rising liver numbers
Switched to Mtx injections and started pred as a bridge until Mtx took over
Never made it
Every drop in pred and symptoms returned
And Mtx injections made him sick with flu like symptoms for about 2-3 days every week
So after 10 weeks switched to remicade

Remicade wasn't offered before he failed Mtx btw

Big fan of biologics
Ds starred remicade at age 8 and now is age 12 on humira.
The infusions were the best part of crohns per Ds
The nurses at the infusion center spoiled him
Lots of warm towels/blankets/pillows
Watched movies
Played video games
Had junk food and snacks
Missed school
All things a 8 year old loves

He has been on humira since age 9 due to a reaction to remicade
Humira is 5 minutes tops to adminster the shot
So you can take it with you on vacation etc ..
He also takes a tiny dose of oral Mtx to help his JSpA.
No issues with oral Mtx.


Love biologics makes my kid feel normal without the dreaded side effects
Hugs

 

[crohnsinct]

I have a daughter on REmicade and am a big fan. However, I have another daughter on just Methotrexate.

There is no harm in trying Mtx as mono therapy to see if it works and then if it doesn't adding the biologic. However, it does take up to 12 weeks to build to therapeutic levels so you would have to do something to attack the inflammation that was seen. You could do this with either a course of steroids or Exclusive Enteral Nutrition. I am a HUGE fan of EEN. Formula only no food. It is very rare (not impossible...some have success with 20% of calories from food) that someone is able to maintain remission on a formula and food diet but exclusive works great.

FWIW - my younger daughter has been on mtx only for a year and she can not maintain remission without steroids or EEN....just sitting here waiting for the doc to pull the plug and say move to biologics but he seems happy with her mild inflammation...don't get me started!

Good luck with your decision!

 

[Mehita]

Big biologic fan here too! My son has been on Remicade for almost 2 1/2 years now and in remission the whole time. One thing to consider is you'll want to get his disease under control before puberty really starts to kick in to avoid growth delays. In that case Remicade might be a better option because often times it kicks in quicker than methotrexate (though not always). And like CIC said, you'd have to add something to tide him over until mtx kicks in. With Remicade you might not. Everyone is so different, it's really hard to even try to predict what will work best. Lots of mights, maybes, and possiblys. I'll just toss out there that my son was feeling great and had normal labs by the second infusion.

Another thing to consider is that if your son still has inflammation, oral methotrexate may not work well since it needs to be absorbed in the stomach, while methotrexate injections might work better. You didn't say specifically, but if the reason you think the infusions would be tough is because of the needle, keep in mind that mtx might involve a needle as well.

I won't say my son loves his infusions, but he does enjoy the time off of school and dedicated video game time without mom harping on him. Our clinic spoils the kids and makes the whole thing a fun experience.

Good luck with your decision!

 

[pdx]

It's a hard decision; I've heard of kids who have done well on methotrexate monotherapy, and kids who haven't. My daughter started on Remicade immediately after diagnosis, but she takes MTX too, and that combo has worked well for her.

I mainly wanted to address your concern that infusions might be hard for your son. For most kids, the infusion isn't a big deal, but my daughter is extremely anxious about medical procedures (blood draws, shots, IV's, MRE's, etc). We've been able to figure out ways to make her infusions bearable for her. She still doesn't enjoy them, but she doesn't dread them either. We put lidocaine cream on her arm an hour before the infusion, and use a Buzzy as the IV is placed. We also make sure that she has a new movie to watch and her favorite foods to eat during the infusion. Also, she took a small dose of Ativan before the first 3 or 4 infusions. She doesn't need the Ativan any more, but it was really helpful those first times.

Good luck with your decision, and I hope that whatever you choose works well for him.

 

[Maya142]

Wanted to add that I also have an anxious kiddo and that she loved the infusions! She was very nervous for the first one but if you go to a Children's Hospital or a pediatric infusion center (in our experience), the nurses really fuss over the kids! They can use numbing cream for the needle and you can bring Buzzy: https://buzzyhelps.com

She loved that she got to miss school, nap and watch TV! Remicade is usually given once every 6-8 weeks weeks (though some kids need infusions as frequently as every 4 weeks) so it's really not all that frequent. She liked it MUCH more than Humira, which is a painful injection every 1-2 weeks.

MTX can be given as pills or as a shot. Like others said, it typically takes longer to work than biologics. We are big fans of biologics because both my girls tolerated them much better than Methotrexate. They both had side effects with MTX, but NONE with biologics, besides a little tiredness after Remicade infusions.

Many kids tolerate MTX without any problem though. The shot is not too painful and the needle is tiny. Both my girls injected themselves, even as teenagers. You can use ice to make it less painful, but honestly, my kids didn't even bother with that.

It can also be hard on the liver, like 6MP.

Good luck with whatever you decide. It's such a tough decision. I will say that for us, once we put the girls on biologics we have never looked back. Never regretted it for a single second. We are just so grateful that they exist!

 

[Sascot]

We have only used mercaptopurine so no advice, just wishing all the best for whichever choice you make

 

[CrohnsKidMom]

Yes!... and no. After the initial prednisone, my son tried imuran-6mp's sister drug. He wasn't able to tolerate it at all, so was switched to weekly methotrexate injections. It worked quite well for 2 years, then symptoms and inflammation returned about a year ago and my son was switched to Remicade with a lower, oral dose of MTX to prevent antibodies to Remicade.

MTX injections did work for my son, and I felt more comfortable with it than with imuran. But the injections also made my son nervous-I think because it was me doing it-and it did cause quite a bit of nausea. Fortunately, by lunchtime the next day the nausea subsided.

If you were to ask my son which he prefers, he would say the Remicade infusions. Although the MTX worked well, the Remicade works really well for my son, and between infusions he basically can forget he has CD, instead of being reminded of it every Friday night. The low dose, oral MTX he takes now doesn't seem to cause side effects, nor does the Remicade.

Every patient is different in their attitudes toward certain meds, and everyone has different levels of success with every medication. Whichever you choose, I hope it works wonders for your son.

 

[malorymug]

Hi. My son, too, did the pred and then 6mp on diagnosis. He failed to thrive on 6mp after 8 months and we were relieved to be offered Remicade as we had heard good things about it. Remicade has been good for my son, but we are still working on getting the dose right so that he can achieve remission. He takes Methotrexate as well. It potentiates the Remicade and hopefully minimize the antibodies to Remicade.

It took his body and our families schedule about 6 months to adjust to the methotrexate. It made him nauseous and sleepy for about 2 days after taking the pills (he would take them on a Friday night). After about a year we don't notice MTX symptoms any more. I'm not sure if we got used to them or if his body has adjusted and he doesn't react to the medication anymore.

 

[Tesscorm]

No advice re methotrexate but just want to send you support in making the decision. I remember how hard the first few months after diagnosis were, hard enough dealing with a dx but then expected to make all sorts of decision.

My was was solder than yours when diagnosed (almost 17) but he did six weeks of exclusive enteral nutrition (EN) and then suppmental EN for approx. two years. This did not eliminate all inflammation and he was then put on remicade (3 years now?). He does find the infusion schedule bothersome at times (does take a bit of planning to work around dates) but, aside from his, he doesn't mind it. He reads, sleeps, watches a movie, etc through the infusion.

Did your son's GI have a preference? Ours did... and his opinion was definitely a factor in my son's decision. When I questioned why not an immunosuppressant first (mtx, 6mp, etc.), GI felt going top down (biologics first) was the right route to go. Between remicade and humira, GI felt, given my son's age at the time (18-19), it was better controlled, ie injection out of his control (no errors in dosage), bloodwork done at infusion so no delays in getting it done, no worries that he'd forget injection for a day or two, etc. Not saying our GI's preference is the right one, just wondering if your GI had preferences that might make the decision easier for you. :ghug:

 

[lcpalmer]

Do most kids have side effects with methotrexate? We are supposed to start tomorrow evening and with my son feeling so good right now, it kills me to think of giving him something that might make him feel sick.

 

[pdx]

My sense is that most kids on this forum haven't had side effects from mtx. I know it's hard, but try not to worry until he's had a chance to try it--most likely he will have little or no side effects. Hang in there!

 

[dodie74]

My son has been on mxt injection for over 2 years now with no side effects, his dose was reduced as his white cell was low but it evened out. Unfortunately he is flaring and due scopes soon so we may be adding humira or infliximab.
My son injects himself on a Friday night before bed so sleeps through any side effects and can sleep on if he wants to on the Saturday( which he never does)
Good luck with the mxt and I hope it does the trick xxx

 

[Mehita]

My son is on a tiny oral dose (antibody prevention to Remi) and has had no side effects.

 

[malorymug]

I'm hesitant to reply because side effects are different for everyone and the benefits of MTX out ways the uncomfortable symptoms my child has. He is on a low dose to prevent antibodies to Remicade. He takes his oral dose on Friday night so he has the weekend to deal. When he first started taking MTX he would gets nauseous and sleeps a lot for 24-36 hours after. It has gotten better over time.

 

[my little penguin]

Ds takes Mtx 17.5 mg orally every week
No issues so far

 

[lcpalmer]

Completed first dose about half an hour ago. The injection was a breeze for him! So far, (knock on wood!) he feels fine. Praying he wakes up tomorrow morning feeling the same way. Thanks for all the support and feedback!