On Remicade Now Dr. Wants to Add Methotrexate

[Sonnyboy66]

Our 10 year old son was diagnosed with Crohn's disease in the ileum Thanksgiving, 2015. He has had two infusions of remicade and has had no recent symptoms. He is down to 5 mg of prednisone every other day, with the last dose due a week from tomorrow. All his blood tests have shown that his inflammation numbers have returned to normal. Today we had an appointment with the GI doctor who mentioned doing blood tests 4 weeks after his next remicade on 2-8-16, to determine how quickly the remicade dissipates in his system. Then the doctor mentioned possibly adding methotrexate to the remicade to prevent his body developing anti-bodies to the remicade.

What we are concerned about are the side effects from the methotrexate? The CCFA website notes that this causes birth defects and should not be taken by those who plan on getting pregnant, either males or females. As he is still developing will this affect him in the future?

We are concerned.

 

[crohnsinct]

Hi there. Steep learning curve with this darned disease and all the meds.

It is pretty much common practice to put the kids on biologics on an immunomodulator to help keep away antibodies.

The birth defect risk is really only of he has children and even then when planning to become pregnant, if you come off mtx with enough time before that risk goes away.

The other risks to be aware of are risk of liver injury especially with drinking and risk of skin cancer. Hello sunscreen!

They monitor he kiddies liver numbers very closely so if anything goes astray they can take action and when they discontinue the med that risk also goes away.

I have two girls on mtx (one for 3 years). They are both doing well.

There are lots of hints for dealing with side effects ie: shots over oral, dose at night so they sleep through the worst of it and for extreme nausea Zofran...oh yeah and make sure he takes his folic acid as mtx is a folate antagonist...but sure your doc will go over all this.

 

[my little penguin]

Methotrexate when combined with remicade is much lower doses than when used alone
Ds has been on Mtx plus humira for almost two years
In his case to treat arthritis that decided to tag along with crohns and helps reduce antibodies
Ask your Gi but some only have their patients in Mtx for antibodies for the first 6 months others longer.

Honestly in terms of having children science may be in a different place in 16-18 years
They definitely changed with the addition of biologics alone

We go with keeping as much of the kids intestine healthy as possible now since without any small bowel no one survives period

The beginning is really the hardest
Ds was dx at age 7 and now is 12 so we have had time to think and deal with things

Good luck

 

[crohnsinct]

Hey! Just noticed you are from Oakdale....Lon Gisland?! I grew up on the island!

 

[Maya142]

My girls have been on Methotrexate too. My younger one had a lot of trouble tolerating it, but MOST kids are just fine. My older daughter is still on it. She has mild nausea and fatigue the day after the shot but manages without any big issues.

We found shots worked better than oral MTX, but everyone is different. Some kids do better with the pills. The shot has a tiny needle and is not very painful. My girls injected themselves.

There are lots of tricks like has already been said: taking Zofran (my girls like the dissolvable kind, it works faster), using folic acid (you can even up the dose if he has side effects), switching from pills to shots, giving it at night so the child sleeps through the nausea, giving it on a weekend so the child has time to rest, other nausea meds like Granisetron or even Benadryl, Leucovorin (folinic acid) etc.

Antibodies are a real risk - my younger daughter is now 19 and is running out of medications. It's not a great situation to be in, which is why doctors are now recommending adding MTX before your kiddo has a chance to develop them.

Good luck!

 

[malorymug]

Hi. My 15 year old boy has been on the remicade and MTX combo for a year. He has just started developing antibodies to remicade and I am really sad. Anything that you can do to prevent the antibodies should be done.

I have a love/hate relationship with the MTX. It is nice that it is only once a week and it is great that it helps with the remicade. For my son MTX really added to his fatigue. He takes it on Fridays so that he deal with nausea and extra fatigue during the weekend. Folic acid really helps with the side effects.

We haven't talked to him about the dangers of MTX with babies and alcohol because he just isn't there yet, developmentally. But we will.

 

[CrohnsKidMom]

My 11 yo son was on MTX injections for almost two years until the medication failed to keep his inflammation away and he was switched to Remicade. To prevent antibodies, my son was switched to a lower dose of oral MTX, and is now doing well. He was very nauseated with the injectable dose, but has no apparent side effects from the lower, oral dose.

Just as a side note, our friend was on MTX for psoriatic arthritis about 12 years ago. When he and his wife wanted to start a family, his doctor took him off MTX for 6 months prior to when they started trying to conceive. That was 12 years ago, and I don't know what his dosage was, but it's food for thought. And by the way, they had a healthy baby girl!