Adding Methotrexate ...Questions

[awmom]

My son just told me they called from the new GI's office to tell him his bloodworm is normal and that he has NOT built immunity to the remicade, which is a relief.
They want him to start methotrexate, and leafing through several threads it appears to have quite a few side effects (I know some of the kids have had difficulties), dosages vary, and some have said that they are not doing the combo anymore, or sometimes just for a short period?

Any insight, knowledge, suggestions, experiences you might be able to share?
Thanks!

 

[Maya142]

My daughter is one of the kiddos who has trouble with MTX. MOST kids tolerate it just fine though, so you shouldn't worry yet. And the kids who do have trouble with it, often their side effects are mild and easily dealt with.

That said, here are our tips:

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.

We always did it in combination with various biologics. It worked REALLY well for M, and if she could tolerate it, she'd still be on it. I actually really wish she could tolerate it because it was like magic for her arthritis. My older daughter is still on it, no issues.

You are not supposed to drink on MTX. I know N's in college, so I thought I'd warn you. I will say that my older daughter does drink (she swears not a lot, whatever that means :yrolleyes but her liver numbers are perfect.

Glad he doesn't have antibodies -- good luck!

 

[my little penguin]

DS had trouble with mtx by injection as a monotherapy

But he added oral mtx to humira and hasn't had any issues once we upped the folate ( easier version of Folic acid to absorb ) to 2 mg a day .


No issues since
Good luck

 

[crohnsinct]

daughters on oral mtx and no issues! The first couple tired O out but the rest were smooth sailing. T is on 20mg and O is on 10mg.

It really is a good drug for keeping antibodies at bay! Cleared up O's joint pin to!

 

[CrohnsKidMom]

My son was on MTX injections for 2 yrs prior to starting Remicade this past Summer when he was switched to an oral, half dose of MTX. The injectable made him very nauseous (which we did our best to deal with), but he has had very little nausea with the oral form. It probably has more to do with it being a lower dose. He takes ondansetron which takes care of the little nausea he does get. He has noticed a bit of a metallic taste the day following the dose (it's taken once a week), but it's not too bothersome. Good luck!

 

[awmom]

Thank you to all. It seems like the main problem, if any, can be nausea and fatigue, but it seems like it can be managed for the most part. Except for M Maya!!! That is unfortunate since it helped with her arthritis. I still don't know the dosage or if he has been told to take Folic Acid. I'll make sure to tell him and have him try it out on the weekend the first time. It's good to know you can vary the dosage if side effects are strong.
again, many thanks]

 

[pdx]

E takes 15mg orally, along with 1mg of folic acid every day. As long as she takes a zofran 2 hours before, she doesn't have any problems. She takes the MTX just before bed on Saturday night. Hope it helps with your son's symptoms!

 

[FrozenGirl]

I'm on 15mg injected. The only issue I have had with it is nausea so I take a gravol and do my injection before bed to minimize side effect feeling. Good luck!

 

[Farmwife]

Grace was on mtx injections for a couple years.
No side effect for her.

 

[Clash]

C has been on mtx pills and now injections for awhile. No side effects here.

 

[Jenn]

Latest research is that combo meds help reduce likelihood of antibodies to remicade with mtx now the safer choice instead of 6mp, so it's probably worth the side effects/risks. My son's doc wants him on mtx combo with Humira, but he's doing really well with Humira as monotherapy and the literature is mixed for that combo and for how long to overlap. He did do a year combo with 6mp to push him into remission already though.

 

[awmom]

Thank you all! He still hasn't gotten his prescription so am not sure what dosages they prescribed!! I do have another question.....should he space it out between the remicade treatments? The reason I ask is that N told me he would need monthly blood work. Since they already do blood work when he does his remi every 8 weeks, I thought he should wait until he has his next remi appointment (in 3 weeks) so that he would only have to do the extra blood work every other month. Does that make sense?

Also, he still needs to get his flu shot...anything I need to be worried about there (other than no live virus) now that he will be on the combo?

 

[crohnsinct]

Flu shot just has to be two or more weeks before or after infusion. Mtx doesn't change that.

The blood work is frequent at the beginning bu spaces out once they are sure he I tolerating the mtx well. We did one week, two weeks, 4 weeks, sat at 8 weeks for a while and are now on 12 weeks.

 

[Jmrogers4]

Sorry, late to the party. My son, unfortunately, had a rare side effect to methotrexate and developed a horrible asthmatic cough and GI pulled him off as way down on the list of possible side effects is lung scarring/damage.
The GI generally does a duo therapy with methotrexate but given out past experience will not put him on it again. It did work really well on his Crohn's and was the first time that he experienced remission. He took pills and really had no other side effects. He liked it since it was just once a week and the pills were tiny

 

[FrozenGirl]

Flu shot depends on your doc and infusion place. My infusion nurse said they had removed the 2 week wait requirement for flu shot. ( made me really happy as I'm on a 4 week infusion schedule)

 

[Maya142]

We used the same bloodwork schedule as CIC. We were told M could get the flu shot any time, I think she got it just a few days after Remicade when she was on it! No issues.

I would just start the MTX as soon as he gets the script, unless he's really against the extra poke for bloodwork. The bloodwork will become more infrequent so it might only be a couple months when he needs monthly bloodwork.

 

[awmom]

Thank you everybody. I will have him start whenever he gets the script, which should be this week. He'll probably get his flu shot at the pharmacy then at the same time. Thanks again. And thanks also for the heads up on the asthmatic type cough JMRogers. That is so scary! N used to have that a lot as a kid and I'm convinced it was yet one more side symptom of crohn's. That and the headaches. Once his CD was brought more in control, he stopped having the coughs and headaches.

 

[my little penguin]

Fwiw DS has had asthma since age 2 and has even on mtx twice
No issues
Other weird side effects yes
But nothing with his lungs and mtx
Good luck

 

[awmom]

Thanks MLP.