My D had followup colonoscopy. Expecting remission due to how she was feeling. Didn't get that. Had MRE. Active Crohn's seen even though ALL blood tests show no inflammation. On Humira for about a year which seems to have slowed progression but hasn't improved disease. GI suggests adding methotrexate as last ditch effort before surgery. Is the answer resection? Why add methotrexate? Any suggestions?
Adding Methrotrexate
- Thread starter Danasmom
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My son has been through something similar.
He was placed on remicade at dx. Immediately, his symptoms resolved. Blood work has never been a good indicator for him since his inflammatory markers remain normal. Fecal calprotectin was done and it remained high so methotrexate was added to his treatment regimen.
He remained on remicade and methotrexate for a year and a half but the area at his ileocecal valve continued to have chronic inflammation. He required a small bowel resection.
He came off of remicade for surgery and when he started back he developed antibodies. A scope 6 months post surgery and 4 months into humira and methotrexate was clean but biopsies showed inflammation.
During this entire time he was asymptomatic and his inflammatory markers were normal. To this day he is not experiencing symptoms (well now he has anemia) even though his disease is active.
We added a round of entocort and rescoped after another six months. The inflammation was now visibly present from surgical site and throughout colon (in the past the only location of active disease had been around ileocecal valve)
We have increased his humira to weekly, he takes methotrexate injections weekly (equal to 25mg in pill form) and he will have anot her scope in June.
His case doesn't seem to be the norm. Most kids on the forum respond well to a combo of treatment such as humira and methotrexate.
Did the GI run levels tests? Antibodies to humira test? Is your daughter already on a weekly humira schedule? All these things are usually part of the process.
A side note, methotrexate can help the body to prevent antibody formation to humira so it is often given for this reason as well as the synergistic effect it can have to help boost the efficacy of humira.
He was placed on remicade at dx. Immediately, his symptoms resolved. Blood work has never been a good indicator for him since his inflammatory markers remain normal. Fecal calprotectin was done and it remained high so methotrexate was added to his treatment regimen.
He remained on remicade and methotrexate for a year and a half but the area at his ileocecal valve continued to have chronic inflammation. He required a small bowel resection.
He came off of remicade for surgery and when he started back he developed antibodies. A scope 6 months post surgery and 4 months into humira and methotrexate was clean but biopsies showed inflammation.
During this entire time he was asymptomatic and his inflammatory markers were normal. To this day he is not experiencing symptoms (well now he has anemia) even though his disease is active.
We added a round of entocort and rescoped after another six months. The inflammation was now visibly present from surgical site and throughout colon (in the past the only location of active disease had been around ileocecal valve)
We have increased his humira to weekly, he takes methotrexate injections weekly (equal to 25mg in pill form) and he will have anot her scope in June.
His case doesn't seem to be the norm. Most kids on the forum respond well to a combo of treatment such as humira and methotrexate.
Did the GI run levels tests? Antibodies to humira test? Is your daughter already on a weekly humira schedule? All these things are usually part of the process.
A side note, methotrexate can help the body to prevent antibody formation to humira so it is often given for this reason as well as the synergistic effect it can have to help boost the efficacy of humira.
Yes she had her humira levels checked and she has plenty in her system so the GI will not be increasing her dose from every two weeks to every one. The Humira just doesn't seem to be doing the job. She did have antibodies develop to Remicade but not (yet) to Humira. He doesn't think adding the methotrexate will be enough but hearing you say it will not only help to prevent antibody formation but will help boost the efficacy of humira gives me hope I didn't have yesterday after speaking to the doctor. How did your son feel after surgery?
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My daughter is on Remicade + methotrexate, and I think the methotrexate helps her (beyond just helping with preventing antibodies). When we first added the MTX to Remicade, her Crohn's symptoms went down, and when she had to go off the MTX for a few weeks this winter, she started having night sweats again, and those are gone now that she's back on the MTX.
She hasn't had scopes recently, though, so I don't know for sure how she's doing.
Hope that whatever you end up trying gets your daughter into remission.
She hasn't had scopes recently, though, so I don't know for sure how she's doing.
Hope that whatever you end up trying gets your daughter into remission.
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Danasmom, my son did really well with surgery. He was off the pain pump on the second day. He went home with a px of oral pain meds but he only to 1/2 tablet twice after getting hime. Both times were at bedtime to help him sleep.
He had surgery on a Thursday and the following Thursday he was back doing school work and his part time job. He would've went sooner back to work had I not insisted he wait til at least 7 days.
I think the only thing that truly bothered him was that you can't lift more than 10 lbs for 6 weeks after surgery. Once he had the follow up and that restriction was removed he was already physically active in all other aspects (as far as work, school, social life)
Since he has been asymptomatic long before surgery I can't speak to those improvements had there even been any since active disease seems to have cropped up rather quickly.
Mehita has a son that has had surgery and did really well. She'll probably be by at some point to comment.
He had surgery on a Thursday and the following Thursday he was back doing school work and his part time job. He would've went sooner back to work had I not insisted he wait til at least 7 days.
I think the only thing that truly bothered him was that you can't lift more than 10 lbs for 6 weeks after surgery. Once he had the follow up and that restriction was removed he was already physically active in all other aspects (as far as work, school, social life)
Since he has been asymptomatic long before surgery I can't speak to those improvements had there even been any since active disease seems to have cropped up rather quickly.
Mehita has a son that has had surgery and did really well. She'll probably be by at some point to comment.
crohnsinct
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my daughter was put on mtx s year into her Remicade use. Three years later her fecal cal was 450 and little symptoms popping up. We increased her mtx a little (2.5 mg's). 8 weeks later her fc was down to 250 so mtx does seem to be a bit of a player for my daughter.
I'm wondering if my doctor had added the mtx while on the remicade if she could have stayed on the remicade much longer. Once there is proof she has antibodies is it too late to get any benefit from the remicade even if we added the mtx? And if we add the mtx (oral by the way because Humira is extremely painful for her) to the humira and she seems to improve should be postpone surgery and keep fingers crossed or do you think she should have surgery anyhow because then it would be elective? I know you can't tell me but your opinions are important to me because I just keep learning how little I know about this disease.
crohnsinct
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i can't comment on surgery as I haven't been there. But wanted to weigh in on mtx shot. The mtx shots are really nothing compared to humira. They don't hurt at all and the medicine is much more readily absorbed than with an inflamed gut. Also less chance of side effects.
That said both my daughters take mtx orally and have no trouble with side effects. Our doc had us start with injections because there was inflammation and after a number of weeks we switched.
That said both my daughters take mtx orally and have no trouble with side effects. Our doc had us start with injections because there was inflammation and after a number of weeks we switched.
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We started with oral but I think due to the active inflammation causing malabsorption issues it wasn't being absorbed. The reason I say this is because when we moved him to injections, the mtx really helped his joint pain from his other dx JSpA. And the mtx injections don't bother him at all, they are nothing like the humira injections which he loathed when we were using the auto injector. He handles the humira shots much vetted now that we switched to the syringe type.
Of the doc thinks you have time to see if the humira and mtx will work then I would take it. Although if the surgery is due to scar tissue no amount of any med will help.
Of the doc thinks you have time to see if the humira and mtx will work then I would take it. Although if the surgery is due to scar tissue no amount of any med will help.
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Ds did better with oral Mtx than the Sharon terms of side effects
But the shot itself doesn't hurt at all compared to humira
Ds uses the syringe and I add lidocaine to the humira syringe to lessen the pain
No idea on surgery
But the shot itself doesn't hurt at all compared to humira
Ds uses the syringe and I add lidocaine to the humira syringe to lessen the pain
No idea on surgery
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My son had a resection three years ago. What locked it in for us what that we requested that his GI, surgeon and radiologist all get in the same room and come to a definitive recommendation. In his case, the stricture he had was all scar tissue, which no medication can fix, and was only 3mm in diameter while a normal intestine is 3-5cm in diameter. It was a pretty obvious decision for us. His quality of life was non-existent as well and that, too, was a major factor.
Surgery went well. In on a Friday, home the following Thursday and back at school the Monday after that. Unfortunately, because he wasn't on the right meds, he ended up flaring again three months later, so be forewarned that surgery is not a permanent solution by any means. You're still going to have to figure out what maintenance medication will work. Has there been any talk of Entyvio?
I would wonder why you'd add methotrexate if surgery is drawing near, but the bigger question is if anyone can determine if scar tissue is involved.
Hugs to you...
Surgery went well. In on a Friday, home the following Thursday and back at school the Monday after that. Unfortunately, because he wasn't on the right meds, he ended up flaring again three months later, so be forewarned that surgery is not a permanent solution by any means. You're still going to have to figure out what maintenance medication will work. Has there been any talk of Entyvio?
I would wonder why you'd add methotrexate if surgery is drawing near, but the bigger question is if anyone can determine if scar tissue is involved.
Hugs to you...
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We just added mtx for my son, he had his first injection on Friday. He's been on remicade for a year + already with little improvement...dr hoping the mtx works. I'm keeping my fingers crossed that it does the trick...so many things going into his body.
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We added MTX too when my daughter was on Humira then Remicade - both for my daughter's joints and her Crohn's. The shot is very easy - it is a tiny needle and the medication does not burn like Humira.
Both my girls gave themselves the shot, even as young teenagers (13-14). You can use ice and Buzzy.
My younger daughter had lots of side effects with MTX (nausea, dizziness) and had to come off it but it REALLY REALLY helped her arthritis. I also think it helped her Crohn's and she was on Remicade 3 separate times without having a reaction and never developed antibodies, so clearly it worked there too (Remicade did eventually stop working despite not having antibodies).
My older daughter has been on MTX for years and is doing very well on it. She has some mild nausea with it but no bad side effects. Zofran can help with nausea and so can daily folic acid. She also gives herself the shot at night so that she sleeps through most of the side effects.
Both my girls tried oral MTX and had much worse side effects - lots of nausea, vomiting for the younger one, mouth sores etc. Some kids, however, tolerate the oral MTX just fine - it REALLY depends and is trial and error unfortunately.
We have no experience with surgery so can't comment on that.
Good luck with whatever you choose!
Both my girls gave themselves the shot, even as young teenagers (13-14). You can use ice and Buzzy.
My younger daughter had lots of side effects with MTX (nausea, dizziness) and had to come off it but it REALLY REALLY helped her arthritis. I also think it helped her Crohn's and she was on Remicade 3 separate times without having a reaction and never developed antibodies, so clearly it worked there too (Remicade did eventually stop working despite not having antibodies).
My older daughter has been on MTX for years and is doing very well on it. She has some mild nausea with it but no bad side effects. Zofran can help with nausea and so can daily folic acid. She also gives herself the shot at night so that she sleeps through most of the side effects.
Both my girls tried oral MTX and had much worse side effects - lots of nausea, vomiting for the younger one, mouth sores etc. Some kids, however, tolerate the oral MTX just fine - it REALLY depends and is trial and error unfortunately.
We have no experience with surgery so can't comment on that.
Good luck with whatever you choose!
I believe the reason my GI wants to add mtx is because he is unsure if my daughter has scar tissue because there is too much inflammation to see during the colonoscopy. There is a stricturing but not horrible and she actually has "regular" bowel movements with no Diarrhea. It's always been this way. (hope it lasts!!) Unfortunately we just don't know and have been unable to get the inflammation under control to know what's happening. Therefore he is looking to see if the mtx can reduce the inflammation since humira alone is not doing the job.
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I see. Well, if there is a chance that meds can help first, that would be best. I know it's really hard to determine if there is scar tissue. I think we got lucky in that all three specialities were willing to get together and make a recommendation.
Good luck with the methotrexate!
Good luck with the methotrexate!
crohnsinct
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For some patients tnf is only partially responsible for their Crohn's and there could be other factors driving the disease. This is why combo therapy works for some or maybe tnf doesn't work but anti adhesion drugs work. It is just a game of figure out the drug and/or combo. Hopefully the mtx can take care of the stuff the anti tnf isn't getting.
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I started on injections and switched to oral due to the really bad nausea I was having with the injections. Been switched for a month and I have way less nausea though I have more fatigue the next day. Basically injection gives good absorption but don't write it off if you can't do the injections.
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It's usually best to try the medication route before deciding on surgery. Adding MTX for a year or so is common and should boost the Humira. The combo idea works because it attacks the problem from different sides - one suppresses the immune system creating cytokines, one mops up the excess cytokines produced. Good luck!
as a side note, methotrexate can even be used alone for IBD treatment, so it is definately a medication that could help in the mix with Humira. I already tried it as sole treatment but it didnt work for me unfortunately. I had the injections and no reactions. Injections over pills are preferred route of administration for methotrexate for IBD patients.
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