Remicade with low dose Methotrexate. Should we stop the Methotrexate?

[CrohnsKidMom]

My 19 yo son has Crohn’s and has been on Remicade/8 wks, with low dose (12.5mg) Methotrexate for about 8 yrs. Treatment is working well-bloodwork good, trough levels good. He is been in remission for a number of years and has only mild symptoms-very thankful! The low oral MTX dose is to prevent antibodies to the Remicade. His GI advised studies now show that antibodies are far less likely to occur if you’re on MTX the first year of Remicade, and perhaps stopping MTX is now a good idea. While we’d like to get him off the MTX, we don’t want to risk him developing antibodies to the Remicade. Has anyone had experience with stopping MTX after years of the Remicade/MTX combo?

 

[Scipio]

If it were 6MP I might be more inclined to stop and go with Remicade alone, since 6MP is a generally nastier drug than methotrexate. Is the methotrexate causing any side effects that you are aware of? If not, I might go with the "If it ain't broke don't fix it" philosophy and continue with things as they are.

Your description: "Treatment is working well-bloodwork good, trough levels good. He is been in remission for a number of years and has only mild symptoms...." is exactly where all IBD patients want to be.

I know that monotherapy (biologic only with no added immunosuppressing MTX or 6MP) is currently getting more popular in publications and with IBD docs. And in fact I'm on Stelara monotherapy myself, but as a general rule, unless there is a good reason to do so (such as side effects), I would be very reluctant to alter a therapy that has been working so well for so long.

 

[CrohnsKidMom]

If it were 6MP I might be more inclined to stop and go with Remicade alone, since 6MP is a generally nastier drug than methotrexate. Is the methotrexate causing any side effects that you are aware of? If not, I might go with the "If it ain't broke don't fix it" philosophy and continue with things as they are.

Your description: "Treatment is working well-bloodwork good, trough levels good. He is been in remission for a number of years and has only mild symptoms...." is exactly where all IBD patients want to be.

I know that monotherapy (biologic only with no added immunosuppressing MTX or 6MP) is currently getting more popular in publications and with IBD docs. And in fact I'm on Stelara monotherapy myself, but as a general rule, unless there is a good reason to do so (such as side effects), I would be very reluctant to alter a therapy that has been working so well for so long.

Thank you so much for your response! The methotrexate is tolerated quite well, with the exception of some nausea and constipation for 24 hours following taking the med. My son is still able to continue his day though. We are sitting on the fence about stopping the mtx. As you said, often feeling “don’t fix it if it ain’t broke”, but also thinking the less drugs, the better. The dr stated that new studies show that mtx helps prevent antibodies for the first year on Remicade, but it doesn’t so much to prevent it after that initial year. I’ve not been able to find much online myself to support this, so I guess my son will keep taking it, and we’ll remain on the fence for now.

 

[my little penguin]

The other thing to consider is even low mtx boosts the remicade action.
So while antibodies may or may not form
Your kiddo may need the mtx added to remicade to get it work where it is now .

my kiddo has been on Stelara plus mtx for years
But his case it’s for his juvenile arthritis

 

[CrohnsKidMom]

The other thing to consider is even low mtx boosts the remicade action.
So while antibodies may or may not form
Your kiddo may need the mtx added to remicade to get it work where it is now .

my kiddo has been on Stelara plus mtx for years
But his case it’s for his juvenile arthritis

Thanks for your reply! And yes, you’re right. Perhaps the MTX is why he is doing so well on Remicade. Nice of the adult GI to give us the freedom to decide ourselves, but I miss the communication and advice we used to get from our paediatric GI.

 

[Pangolin]

I'm skeptical of MTX and the reports of "brain fog" I've read, even at low doses. My son was prescribed MTX at first but we ended up refusing it (correctly, in my opinion).

 

[my little penguin]

@Pangolin
My kiddo is in college Deans list -no brain fog and has been on mtx for 10 years so ….
Not all potential side effects happen to everyone.

 

[CrohnsKidMom]

@Pangolin
My kiddo is in college Deans list -no brain fog and has been on mtx for 10 years so ….
Not all potential side effects happen to everyone.

No brain fog in my son either. It’s the potential serious side effects that does cause some concern-although that wasn’t at the top of my mind before I was presented with the option of stopping the MTX! I think for now, my fear of him developing antibodies to the Remicade is greater than the fear of potential side effects of the MTX. May revisit again down the road.

 

[Jo-mom]

My son was solely on Remicade for the first 4 years but his levels were levels were still okay (6.7) but he added MTX last year and it increased the Remicade levels and actually helped. He also has no side effects with the MTX and definitely no brain fog.

 

[asadmom]

Another piece of data to add: a reputable researcher was on Remicade and MTX for 10 years. She didn't stop the combo treatment even though her care team repeatedly asked her to scale back due to the excessive immunity suppression. After all, this disease, its treatment... had become a "lifestyle" and she couldn't brace for a change although we were supposed to listen to our doctors right?

She got cancer and that was what it took for her to ditch mtx. She has been in deep remission since then on Remicade alone.

She documented her journey publicly and it's a good reminder to "trust but verify" the many, many things you hear on the internet that could have profound impacts on your health.