Re: methotraxate
My daughter was on methotrexate only a short time before they decided she was allergic to it. She had bone pain and severe chest pain. Hopefully you won't need to add any more drugs.Dea
Peanut 12yr, CD, GERD, Asthma, Mitral Vavle Prolapse
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Re: methotraxate
Daughter was on remicade with great results and no MTX or Imruan. Never developed antibodies. Remember, it's your choice as the parent to agree or disagree with docs recomendation. Good luck, I'm sure others will add to this string with other ideas.
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Re: methotraxate
Daughter was on remicade with great results and no MTX or Imruan. Never developed antibodies. Remember, it's your choice as the parent to agree or disagree with docs recomendation. Good luck, I'm sure others will add to this string with other ideas.
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Re: methotraxate
Hi Fran,
MTX is a chemo therapy agent that also acts an immuno modulator in lower doses for RA and Crohn's.
Remicade is a gentically engineered antibody developed from mouse proteins. It's designed to modify the TNF response (tumor necrosis factor) which is implicated in many inflammatory diseases.
I'm only telling you this so you might get some insight into what your doc is trying to do. Esseentially, every time Lauren gets her Remicade her body is receiving a foreign object that it may reject (we're not mice!!). That's why first infusions are done slowly to lessen the shock and to allow time to respond in case she reacts.
It used to be that kids on Remicade also received Imuran to potentially mitgate a rejection reaction. Imuran is also given in higher doses to transplant patients. Imuran and Remicade are no longer combined.
MTX is the same idea. By suppressing the immune system perhaps you also suppress the potential reaction to Remicade.
So that's the science rationale behind it. As for the drug, Haven was on MTX injections and for him, it was terrible. Severe nausea, respitory infections, hair and weight loss. But that was him. Other people seem to tolerate it much better.
Right now, he takes Remicade by itself and gets IV steroids and Benadryl right before he's infused. He's never had a reaction. That said, the drug is no longer working that well for him and we're looking at Humira next (same drug as Remicade but derived from a human protein...hence the name and also, less chance of rejection).
It's very difficult to start piling on these drugs because it starts to feel out of control. You might be tempted to say can we wait and see if Lauren needs the MTX? To that, the Doc will probably explain that once she has a reaction they're not likely to continue the Remicade. Tough call.
How is she feeling? Mary
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Re: Re: methotraxate
Shes feeling really good.Since the ist infusion all bms are normal except one.She overdid it running around and had leg aches.I gave her ibuprofen without thinking.I think it upset her stomach and she had a little blood for the first time.The next day she was back to being alright.Just taking it one day at a time.The sad thing is I feel like Im always waiting for her to say her stomach hurts or something.Guess I just have to enjoy having her back and not think about tomorrow.Thanks for asking.
Now thinking about this other drug.Its true I feel so out of control giving her all these strong drugs.Iam feeling like we did the right thing though.What else could we do right?Im sure you and everyone else here has been in the same boat..I will keep those side effects in mind that Haven had and ask the doctor about it.
I try to keep it all in perspective.The remicade infusions are done in the oncology/hemotology section of the childrens hospital we go to.That is where the gastroenterologist is.I keep trying to say we are fortunate.Its so scary and sad.Children shouldnt get sick like that. Anyway enough downers!We are feeling pretty positive around here and hope to continue that way. Good luck with the Humira.I hope it does Haven good Fran-mom to Lauren 10(remicade and soon mtx)
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P.S. 5 mg is a low dose
If it makes you feel any better, 5 mg is a low dose. My son was on 15 mg of methotrexate when it was used alone at age 9 and 10. He is now on Humira and weaning down to 7.5 mg mtx. Even at 15 mg of the oral, he had no side effects, whereas the injections did give him side effects.
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Re: methotraxate
While my son was on remicade he was switched from 6-MP to MTX because of pancreatitis. After the black box warnings came out our GI would have made the switch anyway.
If you research it remember the doses given to IBD patients are much much lower than when it is given to cancer patients. My son took it orally but a lot of IBD patients are given MTX by injection for better absorption. It seems to be tolerated fairly well. MTX is usually only taken once or twice a week. MAKE SURE YOU ARE GIVEN A SCRIPT FOR FOLIC ACID if you start this medication. Very important. Laura (max 4 IBD)
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Re: Re: methotraxate
What is the purpose of the folic acid
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Re: methotraxate
I think because they aren't using Remicade with 6mp anymore, it's become the new protcol. Our daughter gets a solu-medrol injection at infusion time to offset reaction and prevent antibodies from forming. I think it's working fairly well (although we're not 100% sure on the antibody formation). That's another option you have.
Christine
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