Remicade antibodies

[kernelmom3]

I just got a message online from DD's GI that she has developed antibodies to Remicade. The good news is that her Remicade levels are still ok but now she wants to start her on Methotrexate once a week. I'm pretty upset that a) she chose to tell me this over an online message and b) I didn't even know she was drawing a Remicade level test! My insurance doesn't cover those and each one is about $2000! Obviously I'm glad she did the test but now I'm mostly confused, upset and scared. I know 6MP and Remicade together greatly increased the chances of cancer and since Methotrexate is also an immunimodulator, does that mean adding IT to Remicade will increase the chance? My father-in-law was taking Humira with Methotrexate for Crohn's and developed skin cancer (now taken care of but still scary). Anyone have any experience with these meds together?

 

[my little penguin]

6-mp by itself increases the risk of lymphoma and skin cancer not the biologic
The risk is not the same for Mtx
Both 6-mp and Mtx slightly increase the risk of T cell lymphoma when combined with a biologic
Ds has been on both for years but get regular skin checks by dermo as all kids with Ibd or JIA should since having regular inflammation also increases the risk of skin cancer

 

[Farmwife]

At one time Grace was on remicade, mtx and sulfasalzine at the same time.
I cant answer about the cancer risk but health wise she did well on them.
She got good enough that we were able to drop her mtx.

Please talk to the gi nurse about not being asked about the test being done.
They should know that will cost you and you should have been asked first.
Sometimes you can get the cost lowered if they asked before it's done.
You should find out if they did this.

 

[Maya142]

My kiddo has been on both at various times. The cancer risk is slightly higher with Imuran/6MP. She could not tolerate MTX so is now on Imuran.

We did have a skin cancer scare and she had to have a mole surgically removed. The mole had doubled in size in the last couple years but it was found to be benign. I would just see a dermatologist regularly and make sure to pay attention to ANY skin changes. We see one yearly.

Besides that, we have had no issues with combination therapy - no increase in infections or anything like that. It has worked really well for both my girls (older one is on MTX and Humira).

There is a great presentation that discusses the risks and the benefits of IBD treatments (which I'm sure you've seen at some point, but it has the statistics): http://programs.rmei.com/CCFA139VL/

Honestly, I much prefer MTX to Imuran/6MP but since my younger daughter could not tolerate it at all (which is not common), we're need to use Imuran.

Most kids have no issues with MTX and it does work well for many kids. Some kids take MTX pills while others do the shot. The shot is very easy (tiny needle) and is pretty much painless.

Good luck!

 

[kernelmom3]

What kind of side effects come with mtx? I'm too scared to google
it!! What was the reason she couldn't take it?

 

[Maya142]

Nausea is the main one. Hers was an extreme reaction -- she was nauseous and dizzy for two days. We tried every trick in the book to make it work because MTX worked SO well for her joints!

Her older sister takes it weekly with no side effects except mild nausea.

Most parents give MTX on a Friday/Saturday night so their kiddo can sleep through the worst side effects. Kids are given folic acid to prevent side effects, and Zofran is given to help with nausea (if necessary).

MTX is used a LOT in the JIA world and MOST kids are absolutely fine on it.

 

[kernelmom3]

I just spoke with GI. She wants DD to start at 10mg a week orally. She said it's the lowest dose. How does that compare to what others take? She also said she'd prescribe Zofran and she can take it at the same time...wondering if anyone else does this?

 

[Maya142]

Yes, we've done it. Most people start Zofran after doing a couple doses of MTX to see if it causes nausea (it doesn't for everyone). It did for my younger daughter so we'd give Zofran half an hour before the MTX and then once the next day when she woke up (8 hours after the MTX).

Your daughter should be taking folic acid with MTX - that should help prevent side effects.

We have done both oral MTX and the shots. The shots worked better for both my girls and some GIs prefer them because they are more easily absorbed, especially in kids with IBD. But others do pills and some kids do really well with pills.

10 mg is a low dose. We have had the girls on anything between 7.5 mg and 25 mg.

 

[my little penguin]

10 mg is pretty low
Ds was as low as 7.5 mg but is on 17.5 mg right now
Zofran is for nausea
Some get it
Some don't
We have a filled script at home just in case but don't take it unless he needs it
Take folic acid daily with Mtx
Ds takes 1 mg of FOLATE. twice a day everyday even Mtx day
This reduces side effects of Mtx
When he took straight folic acid he got flu like symptoms
And lots of mouth ulcers

No issues with FOLATE
good luck

 

[kernelmom3]

What would I do without you all!!?? DD is taking a prenatal vitamin daily and it has 800mcg of Folic Acid so GI said that was good. Does that sound right?

 

[Maya142]

Some doctors say it's ok to start with a multivitamin with folic acid. For some kids that works well.

Other docs actually prescribe it separately (we were given 1 mg of folic acid, upped to 2 mg when my daughter had side effects).

You could try the multivitamin and if she has side effects ask for the prescription.

 

[pdx]

My daughter also did well on the combo of Remicade and mtx. She was on 15mg of mtx a week.

In reference to the levels and antibody testing, I've seen a couple of news articles lately saying that Janssen (the maker of Remicade) is offering to pay for two rounds of testing a year, so maybe your doctor used this new program? Here's some info about it:

http://ibdnewstoday.com/2016/09/19/janssen-monitor-remicade-ibd-treatment-for-free-ibd-patients

If your doctor didn't use this program, and your insurance doesn't cover the test, then you can usually get the fee reduced significantly by the testing company, after going through an appeals process. If you do a search on this forum, you'll find several threads about this process.

Hope that the mtx helps.

 

[CrohnsKidMom]

My son used to be on MTX shots as a monotherapy. That stopped working 1.5 yrs ago, so he moved on to Remicade and switched to a lower, oral MTX dose. The MTX shots made him very nauseous, even with the anti nausea med. the lower oral dose does not give him any side effects. There has been no mention from the GI about dropping the MTX.