Remacaid and Methotrexate

[soccerswimmom]

My son Aaron just turned 15 this past monday. We found out he had crohn's Feb of 2013. My son had been seeing an Endo doctor for the past 3 to 4 years because he was very short. January of 2013 the Endo doctor wanted to run a blood test because he had not grown at all in 6 months. The Endo doctor suspected my child might have crohn's. I have always knew something was wrong but never suspected crown's. Aaron did not have any crohn's symptoms at all. He said he had a little belly pain here and there that last under a minute. The only thing wrong was he was too short. He is very active in soccer and has great grades. The year before he was diagnosised I blew off the tireless and grumpiness and him being a typical teenager. The GI doctor started him on Pentasa (which he currently still on) but then found out he still had inflammation because of blood work. Because Aaron needed to gain much growth before puberty the doctor started him on Remicade last June. Remicade has been wonderful for Aaron. He has gained almost 30lbs and almost 5 inches in height. He is not moody and doesn't require as much sleep. Back in March we had a stool sample tested. He still had some inflammation. The sent blood work off to test the Remicade. There were no antibodies (which is great) but his body is metabolizing the medication too fast. The options were to double the dose of change infusing time to 6 weeks. My son hates having the IV's started. Once the IV is in, he is fine. He went for 8 weeks and double the dose. He just had the double dose yesterday. Now the question is: Do we add Methotrexate to the regimen. He has about 3 more good years of growing. From his bone x ray he is age 13. The doctor thinks his potential is 67 to 68 inches. He is at 60.8 inches. They say Methotrexate can help prevent antibodies of Remicade from forming. My son does not want to take the medication because he does not want to have blood work done every week and he just doesn't want to add one more medication. So far no antibodies. Do we risk that in 3 years there may not be any antibodies forming or do I make him take the medication just to secure that the remicade keeps working as it has this last year? What advise could you please offer.

 

[Jmrogers4]

Welcome soccerswimmom!
I'm going to tag Clash as her son was on the remi/metho combo until recently.
My son will be 15 in just a couple of months and we are dealing with the whole non/slow growth issue as well. He started remi in January and has gained weight and grown an inch. He had his last infusion 2 weeks ago and we moved to a 6 week schedule for the next dose and will most likely up the dosage and go back to 8 weeks after that.
The methotrexate is usually on given once a week either by injection or pills. And generally once thing get under control you would not have to go for blood work every week.
My son had a reaction to Methotrexate a few years ago when he took it as his only medicine so unfortunately a dual therapy with it is not an option for us and I just hope the remicade lasts a long time without developing antibodies at least for his growing years but hopefully longer.
Please feel free to ask any questions. You also might want to check out the parents of Ibd section. Lots of parents who have run the gambit of treatment so there are very few question someone has not already had to deal with.

 

[soccerswimmom]

Thank you very much for your reply. This is the first time I have ever written on a forum. I am still so new on how to navigate through these sites. Hope your child does well on the Remicade. Remicade has done wonders for my son. I just want the good results to keep up.

 

[Jmrogers4]

Thank you! I can so understand the wanting it to last unfortunately with this disease and children you have to be ready to try something else quickly. The good news for you is that studies have shown that remicade given in the first couple of years after diagnosis have higher remission rates. It just may be that he needs a little extra to help the remicade along. Another mom whose daughter is about the same age did EEN (eternal nutrition) and it helped the remicade get everything under control and kept it there even when they finished the EEN. I think her daughter also took methotrexate along with the remicade but it was not for her crohn's but another condition, crohnsinct?
We have quite the little family here on the forum and it is a fantastic place to come for support, advice, vent and even laugh with people who really understand

 

[Clash]

Hi, my son was dx'ed at 15 and went straight to remicade. It was awesome for him as well, right off the bat. But, unfortunately symptoms would return at about seven weeks. So we tweaked the dose, shortened the schedule and finally added MTX. He started out with the oral form, once a week, 25mg, which was 10 small pills. After a normal fecal calprotectin test we reduced the MTX to 7.5 mg a week.

After a year even with no symptoms he has had disease progression at his terminal ileum and he was on high dose remicade. So we dropped the remicade.

He also received a new dx of spondylitis so the rheumatologist switched him to MTX shots that he gives himself every Thursday.

Some kids have nausea and fatigue with MTX but C has had no side effects what so ever. He has always gotten his blood work done at his remicade infusions, so every six weeks, except at the start of adding MTX they took the lab work every two weeks for a month.

 

[crohnsinct]

Hi there soccerswimmom! I am also a swim mom. JM is right. My daughter was dx'd at 12 and went right away onto Remicade. While it worked it wasn't enough to control her symptoms. We did the same testing you mentioned and ended up at every 5 weeks at the 10mg/kg dose and it still wasn't enough. We were presented with mtx but asked about a course of EEN to avoid adding more drugs. The EEN worked in terms of getting her to remission. About a year later we were faced with adding mtx but for psoriasis and psoriatic arthritis which was actually a by product of the Remicade. Our daughter has grown 6 inches and gained 35 pounds since dx. Remicade has been a miracle for us so I well understand you wanting to give it every chance possible to work. However, every medicine does carry risks and there are risks with mtx and more risks with the mtx/Remi combo. Low risks but they are there so they have to be considered and weighed against the benefits. I think you have a valid question and would encourage you to discuss it with your son's doctor. Our GI does not practice adding mtx or aza just to prevent antibodies right off the bat. He is of the watch and see camp and will add as necessary.

Same here with blood testing. Frequent at the beginning but now it just gets dome at infusions. BTW - my daughter is doing so well and is metabolizing the drug slower now so we are trying every 7 weeks still at max dose! Fingers crossed.

Good luck with whatever you decide and please let us know what your doc says...we love to hear and learn from all the different opinions even if it does muddy our waters