Methotrexate giving us trouble

[malorymug]

14 y.o. started on Remicade and MTX in January and for the most part he is doing well. Gaining weight and feels better 50% of the time. And his blood work is beautiful.

He takes oral 7.5 mg of Methotrexate once a week. I think the MTX makes him feel bad (fatigue and lack of appetite) for 2-3 after the dose. We've started giving it to him on Friday nights so it doesn't affect school, but it sucks that he just sleeps all weekend.

Do you all have any tips and tricks to reduce the symptoms after the MTX? Is the shot less problematic than the oral? Is there something I can give him to help?

Thanks.

 

[Clash]

My son has no bad reactions to either oral or shot but the shot is supposed to be easier since it bypasses digeastion. C was px'ed folic acid as well which helps some with side effects as mtx is an anti folate

 

[pdx]

My daughter is also on Remicade and MTX. She takes 15mg of MTX orally, also on Friday night. She's only been taking the MTX for 5 weeks, but so far her reaction to it has been small. She takes a zofran at 8pm on Friday night, and then takes the MTX at 10pm, just before bed. A couple of times she's felt a little nauseated Saturday morning, and she'll take one more zofran. Otherwise, we've actually seen a boost in energy and less diarrhea in the days after she takes the MTX--I think that right now, that's the drug that's actually controlling her Crohn's most.

I realized the other day that she's actually getting 2 mg of folic acid a day. She takes a 1 mg pill each morning, but she also gets another 1 mg from her Peptamen. I don't know if all that folic acid is the cause of her MTX tolerance, or if she's just lucky that it doesn't bother her.

Hope you can find a way to reduce the side effects. It's so hard when the medicine that's helping you heal also makes you feel rotten.

 

[my little penguin]

How much folic acid is he on ?
DS takes folate .... Easier to absorb form of folic acid.
He takes 1 mg x2 day .
That made a big difference for him .

Good luck

Tagging Maya

 

[Maya142]

We have had SO much trouble with MTX with my daughter, which is a shame, because it worked like a miracle for my daughter's arthritis.

So, here are our tricks:
1) Shot over pills - M had a very hard time with the pills - nausea, mouth ulcers. The shot definitely had fewer side effects and it's a tiny, tiny needle and a pretty painless shot - she gave it to herself even when she was 13-14 years old.

2) Zofran -Before we gave M the MTX at night, we gave her Zofran. Then gave Zofran again in the morning. Zofran made her tired but helped with the nausea and dizziness. We found that the dissolvable Zofran worked faster than the regular pills.

3) Folic acid - M took 2mg per day - increasing the dose meant no more mouth ulcers, though M did still have nausea/dizziness.

4) Leucovorin - For whatever reason, rheumatologists seem to prescribe this more than GI's. It is folinic acid - a "rescue drug" used with MTX, typically when MTX is used in high doses for cancer. The doses used for IBD of both Leucovorin and of MTX are much lower. The Leucovorin REALLY helped my daughter with the side effects of MTX. She took it the morning after MTX, I believe.

5) Nausea drugs - Besides Zofran, the other drug we had success with is Kytril (Granisetron). M's rheumatologist prescribed it - it's very similar to Zofran, but seemed to work better for M. It's used a lot with chemotherapy. Insurance does not like it because it's expensive but did pay for it. The last time M was on MTX (she's been on MTX three separate times) we used it instead of Zofran.

Unfortunately, M just could not deal with MTX, as I said, we tried it 3 different times at 3 different doses (25mg, 15mg and 7.5mg - by injection). She had an extreme reaction - she would be so nauseous and dizzy that she was in bed for two days a week and it just wasn't worth it. Decreasing the dose helped but just not enough to make it worth dealing with every week.

Most kids have mild side effects though, that can be managed. M's older sister takes MTX with just some nausea and tiredness the day after the shot - no real issues.

Good luck!

 

[malorymug]

He is taking 1mg of folic acid. I'm confused on the difference between folic acid and folate. Where do I get folate? I asked the GI doc and she thought folic acid was fine even with the MTHFR mutations.

 

[my little penguin]

We get folate at the vitamin shoppe
Other places like gnc etc may have it as well
http://m.vitaminshoppe.com/m/p/solgar-folate-1000-mcg-as-metafolin-1000-mcg-60-tablets/sl-1014

This is the one DS takes

 

[Farmwife]

Grace is on mtx shots and no side effects from that.

I hope it gets better.

 

[Catherine]

I would start researching the MTHFR mutations which ones does he have?

MTHFR means that the body has a harder time with converting folate to the active form used by the body.

 

[ChicagoMom]

My daughter takes 15mg of methotrexate orally each week. She takes it on Mondays, splitting the dose between morning and evening. We've noticed that she feels a little icky on Tuesday mornings but seems to feel better by the afternoon. It hasn't kept her out of school or anything, but I usually have to pack her a pretty bland lunch on Tuesdays. We are going to try having her take the full dose on Monday mirnings rather than splitting it up during the day and see if that changes anything. Honestly, I'd heard of pretty bad reactions to oral mtx so I guess I'm glad that dd doesn't have it worse, but still. Good luck finding a solution for your son! If it's not one thing it's another with crohn's. Ugh.

 

[malorymug]

I really appreciate everyone's response! We have tried several suggestions and I think he is better. MTX still knocks him down but it is no longer for 2 days, just one day. Now that it is summer we are planning around the MTX. What is helping my son is 2mgs of folate (methylated folic acid] each day. He takes the oral MTX mid day and plans nothing the following day.

We weighed the pros and cons with his doc today and he will continue the MTX, with the Remicade.

Remicade seems to be working, he is up and inch and 12 lbs since January. Energy is still low but better.

 

[lenny]

My son couldn't do the oral. Made him feel sick. Handled the shots much better.

 

[CrohnsKidMom]

My son has been on MTX injections for almost 2 years. He does have some nausea and takes Ondansetron, which helps. Folic acid is also thought to help. It does him to be a bit more tired the next day too. My son is moving to Remicade and will be switching to oral MTX. It's harder on the digestive system, so that does have me a bit nervous...

 

[Mr chicken]

Crohnskidmom
DS took injections of Mtx - had a hard time
Moved to oral Mtx plus Humira last June
No issues
Good luck

 

[Maya142]

You can also always go back to the shot if you have trouble with the pills. We did that with my older daughter.
Good luck!

 

[Sascot]

Glad things have settled down. One down day is easier to plan around. Hope things keep progressing well