MTX vs 6MP with Remicade?

[FightingforJo]

I just talked to my daughter's GI doc. We did labs today to get a Remicade level "mid infusion cycle" to see where we are and why she isn't feeling well just 12 days post infusion. (results are not back quite yet)

She said she thinks it is time to add another medicine to the Remicade because prednisone is clearly not a long term option .. and the Remicade unfortunately does not seem to be cutting it by itself

She said she wanted to start 6MP ... that they "gender specify" treatments and that since she is a girl that this one is better long term and doesn't show the same type of negative effects that they have seen using Remicade with 6MP in young boys.

I pushed back a bit and asked about using MTX instead. After reading my research I found that MTX seems to show less cases of rare lymphomas, etc than pairing 6MP with Remicade. Doc said that was definitely an option. Drawback to using that in girls is that it cannot be used once she is in child bearing years (but she is 12, so we have some time to worry about that!) Other drawback is that she likes to use it via weekly injection rather than oral med. Seems to work faster and that is what DD needs. If she can stand getting weekly shots at home.

Doctor said if it was her and it was her daughter, she probably would try the MTX route first. So I think that is the way we are leaning. But wanted to get any other opinions from others that have gone down this path?

I of course am very scared about the effects of pairing Remicade with another medication ... and I know her doctor tried to avoid that as well. But we are there ... so it has to be faced. If we can get DD feeling better and back to a good quality of life then I will be happy. I'm at the point where this disease and the long term effects to her body scare me more than the treatments do.

 

[Maya142]

We have used both with biologics. Now doctors do seem to be using MTX more because 6MP/Imuran have more cancer risks.

My younger daughter had a bad reaction to MTX (but MOST kids tolerate it with NO issues!!) so she has to be on Imuran. I have to say that that scares me a lot more than MTX, but we have no real choice since she has such bad side effects with MTX.

My older daughter has been on MTX (the shot) for years.

The shot has a tiny needle and is not painful. You can use ice or Buzzy and that might help. Both my girls injected themselves.

My younger daughter had severe nausea, fatigue and dizziness with MTX.

Some kids do have issues with nausea, but usually it is easily controlled with nausea medication (Zofran). Taking daily folic acid also helps with MTX side effects.

My older daughter has had no problems with MTX.

My younger one has done well on Imuran - no side effects besides some nausea when increasing the dose.

Good luck!!

 

[Clash]

My son was first on remicade then remicade + oral methotrexate. He then moved to high dose remicade and mtx injections. He's now on Humira and mtx injections.

He hasn't had a problem as far as nausea, fatigue, etc when taking mtx. He has always given himself the injections. The needle are really tiny and don't seem to bother him at all.

 

[my little penguin]

She can be on Mtx once she is childbearing - each doc has different requirements in terms of whether they require birth control measures or not
There are only less Mtx plus biologics T cell lyphoma cases because until the last year or so only 6-mp/Imuran was used in crohns patients plus biologics

The risk still is very small regardless
Risk is 6 in 10000 regardless of the combo

The average person's risk without Ibd or meds is 2 in 10000


That said 6-mp/Imuran by itself does increase General lyphoma risk

Ds was on 6-mp for 8 months
And is now on humira plus oral Mtx
But his Mtx was added for his arthritis not crohns

 

[pdx]

This is a hard choice, and I don't think there's necessarily a right answer. The lymphoma risks of combo therapy with mtx might be smaller, but the risks are very small either way (and even smaller for girls). There's a chance that combo therapy with 6MP may work better; there aren't any studies yet that show that mtx + biologics works longer than biologics alone, while there is a study (the SONIC trial) showing that 6MP + biologics works longer than biologics alone.

That said, our doctor advised us to add mtx, rather than 6MP, even though we have a girl, so that's what we did.

We tested for Remicade antibodies last week, and E doesn't have any yet, but I don't know if the mtx had anything to do with that. However, I am pretty sure that the mtx helped resolve her Crohn's symptoms back when she was struggling on just Remicade, and many people on this forum have found the same thing. It makes sense that if immunomodulators can be used as monotherapy for Crohn's, that they would help when added to a biologic too.

Now that E has been on mtx for a year and is doing well, our doctor is advising us to stop the methotrexate. While the risks of things like lymphoma are small, she feels like general risk of serious infection is lower if kids are not doubly immunosuppressed. She doesn't think that there is any additional benefit in terms of Remicade antibody formation at this point. And she just generally wants E to be on the minimum amount of medicine needed to control her Crohn's well, since the risks of these medicines are not well known, especially for kids. We're just waiting for a few more test results to help us make the decision.

This is obviously a hard question to answer, since there aren't any definitive answers. If you trust your doctor, I would really lean on her advice--that's what we have ended up doing, and so far we're happy with how things have gone.

 

[FightingforJo]

Thank you everyone for all the thoughtful advice! I do believe I am leaning towards the MTX first as I just feel more comfortable with that route ... maybe unfounded comfort, but my heart and head are leaning that way. Her doctor did say that if she was able to remain remission for at least a year we would perhaps talk about removing the MTX. I know we are far from that conversation but I am in agreement that I would prefer my DD to be on the least amount of meds possible to keep her healthy and in remission.

This is definitely a difficult road that I know all of you have been down. I feel so many emotions lately. And right now I'm just really mad at this stupid disease! I guess that is a pretty normal reaction when you see your baby in pain.

Just praying that we are making the best and right decisions for her, short and long term. I do really trust her doctor. I think she is aggressive, while also exercising caution. And right now she is the best advocate I have for getting my daughter well.