First MTX dose tonight

[kernelmom3]

DD took her first dose of MTX tonight (10mg). I forgot to ask doc why MTX is only taken once a week, does anyone know? Also, as far as side effects go, would we notice them within the first few hours or could they develop throughout the week?

 

[my little penguin]

Mtx is always given once a week either by pill or injection
It last a long time in the body similar to humira remicade etc...
Side effects typically after 12-24 range but for ds with injections he acted like he had the flu
With pills took a few weeks and he had mouth ulcers until we upped his folate to 1 mg x2 day every day including mtx day

She may have no side effects at that low of dose
Ds had none at 7.5 mg but had some at 12 mg

 

[Maya142]

Yup, never heard of MTX being given more than once a week. We usually saw side effects in the first 24 hours. My daughter usually took MTX at night and woke up nauseous in the morning. For her it lasted about 48 hours but she also had kind of an extreme reaction.

Some kids do better with shots. We have heard a lot from rheumatologists and GIs that kids have less nausea with shots but studies actually show that there isn't much evidence that proves that. I think it's pretty individual - some kids feel fine with the pills, others feel much better with the shot.

Many kids don't have any side effects at all, so try not to worry too much (easier said than done, I know). 10 mg is a relatively low dose, so hopefully she will be fine.

My older daughter is on 10 mg now (but by injection) and has no side effects at all. With a higher dose (15 mg) she had mild nausea.

 

[pdx]

My daughter often had a little nausea during the hour or two after taking the mtx pills. She wasn't that hungry for breakfast the next morning, and she was sometimes a little dizzy the following morning. All of her (very mild) side effects were over within 24 hours. Good luck--hope your daughter has an easy time of it.

 

[malorymug]

Hi, I hope your daughter is doing well after the first MTX dose. My son has been taking methotrexate for 18 months now. He still struggles with fatigue, nausea, and the blahs for 24-36 hours after the oral dose. Our family has just learned to schedule and work around it. He takes it on Friday afternoon and hopes he can do something fun on Sundays.

Every time I get frustrated with MTX I have to remind myself that it is helping the Remicade do its job and how important Remicade is. We do not have many options here, and the longer we can use Remicade the better.

 

[my little penguin]

When struggling with mtx side effects be sure to speak up to your gi
Folic acid can be switched to folate or increased etc and most of the time that gets rid of the symptoms
For ds switching from injections to pills did the trick and adding folate at 2 mg per day

 

[malorymug]

This is the one my DS takes 2xday at the suggestion of this forum. His blood work shows he is getting enough, still symptomatic though.

 

[Maya142]

Yes, there are plenty of tricks to help with MTX. Try upping folic acid - that worked well for us. We went from 1 mg to 2 mg.

We added Leucovorin, which is a "rescue" drug that is used when MTX is given to cancer patients (in much higher doses). It's folinic acid. For some reason, rheumatologists seem to know about it and use it much more than GIs but you could ask.

If he's on pills, you could try the shots. It's a tiny needle and a pretty painless shot.

You can also add Zofran for the nausea, if you're not already doing that.

 

[Maya142]

Our GI prescribed folic acid for us - 1 mg at first and then we upped it to 2mg. You could try that if the Folate doesn't help enough. It might work.

 

[my little penguin]

Yes that is the folate we use
But we used folate woth the injection and he got sick but not with the pill
Might be worth asking to switch to see
Granted ds wakes up most days feeling off
But we encourage pushing through and he typically bounces back quickly once moving in the morning

 

[Maya142]

The shot is very easy, if he's willing to switch. It's worth a try, it could really help. It made a BIG difference for my older daughter - she went from constant nausea, mouth sores and fatigue to just mild nausea and she doesn't even need Zofran.

My girls were able to give themselves the shots as teenagers. It's a bit scary at first, but they got good at it quickly. We use Buzzy now and my older daughter said she can't even feel the shot with buzzy.

 

[malorymug]

The shot is very easy, if he's willing to switch. It's worth a try, it could really help. It made a BIG difference for my older daughter - she went from constant nausea, mouth sores and fatigue to just mild nausea and she doesn't even need Zofran.

My girls were able to give themselves the shots as teenagers. It's a bit scary at first, but they got good at it quickly. We use Buzzy now and my older daughter said she can't even feel the shot with buzzy.

We asked about the shot a year ago, and the doc said the symptoms would be worse and it was dismissed. I'll revisit again since it seems like Remicade is still working for us after this summer's hiatus.

 

[Worried mama]

My son takes the injection once a week, Friday evenings, without any symptoms. Our folic acid is prescribed by our GI...

 

[kernelmom3]

Thanks again for being there guys! I am thrilled to say she has had no symptoms at all (THANK GOD!)! She did take a sublingual 4mg Zofran with the MTX so I'm sure that helped....even as a placebo if nothing else. One more question: GI and I talked about why DD is going on MTX, reduce further antibodies and maybe current ones too. What is your experience with the antibodies getting better or not worse

 

[malorymug]

My kiddo developed antibodies while on MTX, but his problem was the Remicade dose was too low. When we upped to dose the antibodies disappeared completely.

 

[kernelmom3]

Her last two infusions were upped from 5 per kilo to 7.5 per kilo so I'm wondering if we need to go up to 10. What is to highest does of Remicade? Is it 10?

 

[Maya142]

It depends. Our rheumatologist uses "high dose Remicade" which is up to 20 mg/kg every 4 weeks. There are several rheumatologists doing it and there have been some studies, including one at Boston Children's.

Our GI will not go above 10 mg/kg every 4 weeks though.

 

[CrohnsKidMom]

My son was on MTX shots for 2 years as a monotherapy, and now a lower dose in pill form with his Remicade. Both shots and pills are only given once a week. My son had side effects from the shots within a minute of receiving it. He could "taste" the MTX and was nauseated, and fatigued. It gradually decreased and was gone within 24 hours. He has had no noticeable effects from the lower, oral dose.

 

[polly13]

Lucy takes zofran before and after the mtx tablet - 4 hours before and again the following am and this has really helped with the nausea - she does however tend to be very flu like about 48 hours after taking it for a day or two - she takes 5mg folic acid the day after - moving this to the day after has also helped a lot with the nausea. Glad she has had no ill effects - just watch out for her mouth - our experience is that takes a few weeks so keep an eye and let you gi know if her mouth gets sore.