Remicade & methotrexate
- Thread starter Cdmom
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Both my girls have been on Remicade and Methotrexate. My younger one had a hard time with MTX - severe nausea, some vomiting and dizziness. No side effects at all with the Remicade. We tried every tip in the book so that we could keep her on MTX, since it worked so well for her joints and gut, but eventually she just refused to take it anymore.
Her reaction was kind of extreme - MOST kids have no side effects or very mild, manageable side effects.
Anyway, 8 months after starting the Remicade + MTX combination, my younger daughter was scoped again. Her colon looked "beautiful!" All the ulcers and inflammation they had found during her first scope were gone. Biopsies were clean in her colon, and showed only mild inflammation in her TI. It was really incredible.
My older daughter is still on Methotrexate but now on Humira instead of Remicade. She also did very well on the Remi +MTX combination. She had some nausea with MTX, but it was easily taken care of by Zofran. She is doing great!
I was worried about adding MTX to their biologics - it sounded like such a scary drug. In fact, it even kept me up at night for a while! But after a while, the drugs start to seem less scary than the disease, and we've never regretted adding MTX - not even for a second.
This is a good presentation on the risks and benefits of IBD drugs: http://programs.rmei.com/CCFA139VL/
Good luck!
Her reaction was kind of extreme - MOST kids have no side effects or very mild, manageable side effects.
Anyway, 8 months after starting the Remicade + MTX combination, my younger daughter was scoped again. Her colon looked "beautiful!" All the ulcers and inflammation they had found during her first scope were gone. Biopsies were clean in her colon, and showed only mild inflammation in her TI. It was really incredible.
My older daughter is still on Methotrexate but now on Humira instead of Remicade. She also did very well on the Remi +MTX combination. She had some nausea with MTX, but it was easily taken care of by Zofran. She is doing great!
I was worried about adding MTX to their biologics - it sounded like such a scary drug. In fact, it even kept me up at night for a while! But after a while, the drugs start to seem less scary than the disease, and we've never regretted adding MTX - not even for a second.
This is a good presentation on the risks and benefits of IBD drugs: http://programs.rmei.com/CCFA139VL/
Good luck!
My son is on remicade a high dose every 4 weeks and methotrexate 7.5mg 1x a week. He has done well on both for the most part. There was a time his liver enzymes were high and he had to go off methotrexate and then he went back on after a month of bloodwork. Regarding remicade he gets a pre-dose of steroids if not he has thrown up during treatment and woke up feeling like he couldn't breath. We get our infusions at the Lurie Childrne's hospital Chicago it's kind of a drive for us monthly but there is a Physician Assistant in the area for if things are not quite right. This combination has gotten my son 95% clear of inflammation the other 5% we struggle with he's supposed to take Pentasa and is refusing in every way. This small area has caused him chronic daily pain. I wish your child much luck and success with these meds we have been happy.
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Ds has been on humira plus mtx for years
Oral mtx no issues up to 17.5 mg
Injection 25 mg gave him fatigue and extremely dry mouth and throat
So we switch back to pills
Much better
Oral mtx no issues up to 17.5 mg
Injection 25 mg gave him fatigue and extremely dry mouth and throat
So we switch back to pills
Much better
Is the inflammation perianal?
Is Perianal mean close to the anus? Then yes I think, the area right above that area the lowest part of the colon which causes him to bleed when going to the bathroom and be in extreme radiating pain daily. he has only been in school 1 day in the last 5 weeks.
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My daughter has done well on the Remicade/methotrexate combo. She started on Remicade right after being diagnosed with Crohn's, and then her doctor added 15mg of oral methotrexate about 3 months later.
After a year of being on that treatment combo, our doctor took her off the methotrexate to see if Remicade would be enough on its own. Six months later, she was flaring, so we added the methotrexate back in, and she's doing better again.
The only side effect she gets from methotrexate is mild nausea, which we control with zofran. The only side effect she's had from from Remicade is scalp psoriasis, but she doesn't get that as long as she's on methotrexate.
After a year of being on that treatment combo, our doctor took her off the methotrexate to see if Remicade would be enough on its own. Six months later, she was flaring, so we added the methotrexate back in, and she's doing better again.
The only side effect she gets from methotrexate is mild nausea, which we control with zofran. The only side effect she's had from from Remicade is scalp psoriasis, but she doesn't get that as long as she's on methotrexate.
My son is also doing the Remicade-methotrexate combo. He used to be on methotrexate injections as a monotherapy but it failed to continue working, so on to Remicade we went. His remicade is every 8 weeks, and he takes a lower oral dose (7.5 mg) of methotrexate once a week. He has no major issues with the combo. The MTX injections caused a lot of nausea, but the oral is fine. In my sons case, the oral MTX is for the prevention of antibodies developing to the remicade, the GI is doubtful the MTX is having much of an affect on his crohns.
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My daughter is on Remicade every 6 weeks. We tried just Remi for a few months but her body was just not having it. This was last Jan-May, after she was first diagnosed, and the inflammation was extreme. Her Remi levels when they would do a blood draw were at zero, and that was after 4 weeks. Her body was just burning through it so quickly it was giving her little relief. It was so difficult to watch her suffer. So mid May 2016 her GI added MTX shots weekly and it was like an overnight miracle for her. Within a week or so she was feeling amazing and we have never looked back.
It also kept me up at night and I was even having panic attacks at the start of her diagnosis. Questioning every decision we made and every nasty drug we had to put her on. But the combo of Remi + MTX has given her her life back. Her weight is back on and she is feeling great! We started with the MTX injection as her GI said that can cause less nausea. She has Zofran but has never had to use it. The MTX seems to cause her no issues whatsoever.
We definitely all empathize with all of your anxiety and fear! We have all been there. But once you find the combo that works and you start to see your kiddo get their life back, you will know you made the right decision.
It also kept me up at night and I was even having panic attacks at the start of her diagnosis. Questioning every decision we made and every nasty drug we had to put her on. But the combo of Remi + MTX has given her her life back. Her weight is back on and she is feeling great! We started with the MTX injection as her GI said that can cause less nausea. She has Zofran but has never had to use it. The MTX seems to cause her no issues whatsoever.
We definitely all empathize with all of your anxiety and fear! We have all been there. But once you find the combo that works and you start to see your kiddo get their life back, you will know you made the right decision.
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crohnsinct
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YES! Exactly! That's why we tell everyone when new not to take the threads on here as representative of life with Crohn's. The people on here are generally experiencing difficulty. They come for advice, sort things out and then are off living their happy Crohn's worry free lives which is great! The veterans come in and out to pay it forward and help when and where they can.
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