Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » 6mp AND Remicade--is it too much?


03-17-2013, 12:52 AM   #1
NancyP
 
Join Date: Aug 2011
Location: California

My Support Groups:
6mp AND Remicade--is it too much?

A little background. . . daughter dx with Crohns at 15, had "stomachaches" for years, and was always "slim". The year she was dx she had been getting more pale, more frequent stomachaches, and finally had so much nausea/vomiting/stomachache that it couldn't be ignored. She ended up getting transfused, put on TPN and had abscesses in her belly from her intestines "leaking". At that point was put on prednisone till she could get established on Remicade. All was well for 7 mos, then she got a peri-rectal abscess. On CT there were actually 3 small abscesses, which they treated with IV antibiotics. She again did well for about 10 mos, and then developed another peri-rectal abscess. This one was treated with IV antibiotics as well as surgically drained. The surgeon said he saw "healing tracts" indicating that this was a fistula. He also mentioned the possiblity that the previous abscesses had not completely gone away, but had resurfaced as this one abscess.

SO, after all that. . . . GI wants to add 6mp to her Remicade to prevent further abscesses. Am I being overly optimistic, thinking that since the fistula/abscess was surgically drained and "cleaned out" that she will do well now? Are these drugs really too much for her? At the least, I'm going to ask the doc to wait till after graduation to start the meds. Too much disruption in her life the last 2 years, I want her to be able to go to grad night, and have a nice graduation before we have more potential issues.

Would love to hear thoughts on combining these drugs. Also leads on reliable places to research this further.
03-17-2013, 04:50 AM   #2
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
What a stressful decision to make! My pet peeve about all the drugs is that there are no guarentees. I remember saying to the GI - if he could say this drug would definitely help then I would have less problems with the potential side effects.
My son is on 6mp (he has peri-anal fistula) - so that is the only med I have any idea on apart from what I have read. Our surgeon says that 6mp has around a 50% chance of helping the fistula but a reasonable chance of preventing more. Not sure what the stats are for combining the two.
My son had his rather large abscess drained and diseased tissue removed and has healed really well after about 2 months packing it with silver dressing. The fistula is still there but isn't inflamed and is draining itself without any pain or issues.
Good luck with your decision.
03-18-2013, 02:00 PM   #3
Jenn
Senior Member
 
Jenn's Avatar
 
Join Date: Jul 2011
Location: San Diego, California
So frustrating! It would seem that because the fistula developed in the first place while on Remicade, then Remicade is not enough to prevent future ones even though this one is healed. The latest research indicates that using two meds is more beneficial than one alone.

My son is in the middle of a year-long trial addition of 6mp to his Humira and it's really working! They seem to work slightly differently, covering up the holes of the other. I was really freaked about the risks, such a hard decision. I felt better knowing it was temporary and I read another parent post that their son only achieved remission by doing the same two meds too. Once the year is up this summer, we'll probably drop the 6mp and increase his Humira to the adult dose, he'll finally have enough weight for it. He was good on Remicade alone til he built antibodies, but has a similar history of peri-rectal abscesses, one treated with IV antibiotics (not fun but worked!). Best of luck to you and your daughter.
__________________
Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (20mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
03-18-2013, 08:45 PM   #4
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
Hey Nancy - I wish I had some great advice for you. I do know that it isn't unheard of at all for 6MP or Methotrexate to accompany a biologic. But that's a tough one! I'm sure you are fully aware of all the possibilities that accompany the combo.

Wouldn't it be nice if there was an owner's manual that came along with this diagnosis????

Seriously, though, if you are uncomfortable, what about a second opinion? Another brain never hurts.....

Hugs,

J.
__________________
Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
03-22-2013, 03:01 AM   #5
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Bump.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » 6mp AND Remicade--is it too much?
Thread Tools


All times are GMT -5. The time now is 03:39 PM.
Copyright 2006-2017 Crohnsforum.com