6mp vs methotrexate

[Bmineard1]

Any experiences with both

 

[my little penguin]

Ds was on both
6-mp never really fixed him but never could get to theraputic levels without harming his liver including adding allopurinol.
Mtx injection made him very sick (7 days of flu like symptoms regardless of dose )
Pills still make him sick (nausea ,fatigue flu like but only 1-2 days )
Mtx by itself did not work for my kiddo

please get a second opinion from another ped ibd center .
Most Gi do not recommend switching to remicade unless there is more benefit than risks for the child .
If they are recommending remicade it’s for a good reason

all meds have risks
Infant Tylenol is a good example
Liver damage , Steven Johnson syndrome abd death are possible side effects
Yet I gave it many times to both kids when the ped said to use it
Why the benefits outweighed the risks

we take risks every single day with our kids for quality of life
Ride in a car or swimming

if child is under 14 the risk of death from a car accident alone is 1 in 250
Swimming 1 in 1000

put in comparison to T cell lymphoma is 6 in 10000 if you take 6-mp with remicade at the same time
Average persons risk of tcell lymphoma is 2 in 10000 without any crohns meds or inflammatory disease

it’s a hard decision but please get a second opinion
They typically go up in meds for a reason

 

[pdx]

My daughter has been on Remicade for 6 years, along with methotrexate. For her, the combo works well. When we've tried Remicade by itself, it doesn't work as well as when she's on both. Methotrexate makes her a little nauseated and tired the next day. Our GI doesn't typically use 6mp.

 

[Maya142]

My daughter has been on Imuran, the sister drug of 6MP. It has actually been the only immunosuppressant she had trouble with - she had infection after infection. It also comes with a higher risk of non-melanoma skin cancer, Lymphoma and a very rare type of Lymphoma (hepatosplenic T cell lymphoma) that is very serious and often fatal. It affected adolescents and young adults (more males than females) who had been on 6MP.

My daughter has also been on MTX. She really struggled with the side effects as a teen, though it did work for her. We tried several things to deal with the side effects - switching to the shot from pills (caused mouth sores), doubling folic acid dose, Zofran, lowering her MTX dose, Leucovorin (folinic acid) etc. But none were enough. She eventually begged her doctors to stop it and they did. But now she is re-trying MTX as a young adult and has no side effects at all!!

She found the MTX injection much easier to tolerate than the pills.