Afraid of Dr wanted to switch off Remicade

[#sam's mom]

HI, I am new to the forum. My 12 year old son was diagnosed with fistulizing crohn's 3 years ago. He was on Remicade every 6 weeks for 1 1/2 years but unfortunately it was not the magic treatment it is for so many, but he felt pretty good. When the fistula had not closed the GI took him off and tried Humira (on which he was so sick! high fevers and severe crohns symptoms) then 6mp (again no relief and sick all of the time) doctor put him back on Remicade (thankfully he had not developed antibodies) and he has been on it at maximum dose every 4 weeks and methotrexate and folic acid for a year. Not only has his fistula not healed, a recent MRI reveals a small second fistula. Overall we are VERY thankful that he feels good most of the time despite his disease being so bad - he leads a normal and full life! Every year we see the surgeon about a possible Seton but he says since the fistula is not draining or bothering him the surgery could be more painful and if we could just get him into remission the fistula would heal.

He has a colonscopy this Thursday and his GI is pushing to change medication. She wants to combine 6mp and the Remicade, which we won't do because of the heightened risk of cancer in pediatric boys so her second choice is Stelara or Entyvio. We are VERY reluctant to switch because at least on Remicade he has maintained a good quality of life (able to attend school and play some sports and perform in acting/plays) even though the disease is not under control. Based on how sick he was off Remicade 70% relief seems better than the other possibility. We are also concerned because Stelara and Entyvio have not yet been approved for use in pediatric and thus the risks are not known. (let alone the possible costs) Please respond if any of you or your children have had similar experiences or have switched from Remicade to Stelara or Entyvio? THanks, #Sam's mom .

 

[Maya142]

I responded on your other thread, but I'm going to tag some other parents for ideas.

my little penguin, pdx, Clash, Kimmidwife, crohnsinct, vtfamily, Izzi'smom

 

[pdx]

#sam's mom: I'm so sorry that your son is having such a rough time. Did the colonoscopy last week give you any helpful new information?

I understand your reluctance to change treatment, especially after the change to Humira made things worse. It does seem, though, like Remicade + mtx is not enough for your son, and that damage is occurring internally as time passes. I think I would want to either try a new medication like Stelara or Entyvio, or I would try adding EEN to the Remicade/mtx combo to see if it might provide an additional reduction in inflammation that could boost the effectiveness of his current treatment. Several kids on this forum, including my daughter, didn't respond well to Remicade until EEN was used, although the cases I know about were early after diagnosis, not years later as with your son. In general, though, EEN is very good at reducing inflammation, which then allows the body to better absorb other medications. (My daughter also had fistulizing Crohn's, and she was on EEN for about 8 weeks, and then partial EN for several more months.)

As far as Stelara and Entyvio, while they are not currently approved for pediatric Crohn's, they are definitely being used in pediatric cases, and they've been used for a while with adults. So it's not like the risks are completely unknown. As far as insurance coverage, I would go ahead and start talking to your insurance company about it now. In many cases, as long as your child has tried Humira and Remicade, the company will cover other biologics, even if they are not approved for children. It's definitely worth finding out now, though, because sometimes it takes an appeal process to get approval, which can take time.

Good luck. None of these decisions are easy, I know. I hope whatever you decide on works well for your son!

 

[Jenn]

Remicade usually does heal fistulas. People respond to the biologics differently so one of the others may be more effective for him and worth a try. My son had 8 weeks of IV antibiotics to heal his second fistula, before starting Remicade. The first fistula was laid bare after not healing after draining the abscess, which lead to dx.

 

[Clash]

My son didn't have fistula but he did have severe inflammation at the ileocecal valve that that a year + on remicade and mtx didn't heal. He required surgery due to the severity of damage in that area. He was asymptomatic on remicade (before dx and remicade he was in severe pain (abdominal and joints), mouth ulcers and unable to eat). He had an ileocecectomy and then we started the remicade and again bit he bioltnup antibodies.

He's been switched to humira then stelara since surgery but the inflammation remains at the anastomosis site and mildly now throughout colon. He doesn't really have symptoms as far as Crohns pain or constant D or C or blood. He's unable to gain weight and is sometimes anemic.

He has decided to have a g tube inserted so he can start cycles of EEN and also for supplemental for weight gain when off cycle.

We may be switching to simponi to see of has any effects on the inflammation.

I've always said the fact that he's asymptomatic can be both blessing and curse because I'm so thankful he isn't in severe pain but we are always so disappointed at scopes to see the inflammation is still there. The other side of that is that even though there are no symptoms the inflammation is doing permanent damage.

Always such tough decisions.

 

[kimmidwife]

We have been on Entyvio and now are on Stelara. Enryvio was great for a while until my daughter started getting extreme migraines from it. She has now switched to Stelara.

 

[vtfamily]

Hi there #sam's mom.

I understand the reluctance to switch from something that seems to be working to something new, especially since the black box warnings are so ominous.

Remicade worked for Gus for about 18 months, then we went to Humira. That only lasted a few months. There was a long period of trying to figure out what to do while Vedo was in the works. None of it was good and we were desperate. Tysabri was on the table for a little while, until we found out that Gus was predisposed to acquiring the PML.

The only direction left for us was Stelara. He was 12 years old at the time. It was a long way from being approved for Crohn's...let alone for children with Crohn's. We had to do something, so we took the leap. That was almost six years ago. Gus has been doing extremely well ever since. He gained weight. Puberty kicked in. He grew more than six inches. He feels good. He feels strong. He has been able to engage in activities that he just couldn't handle before...like running track.

I would encourage you to be open to trying new things with the goal of getting the disease under control.

Best wishes to you.
Cheryl VT

 

[Guerrero]

Hello sam's mom,

I think switching from remicade to either stelara or entyvio may be a good idea as those biologics have a different mechanism of action than remicade and humira which are both anti tnf.
Also as suggested by other members een is very effective for children (i experienced it when i was young too and it worked terrific), so it can worth a try to do some weeks of een when starting the new biologics to avoid any relapse while you stop remicade and wait for the new biologic to start working (it could take some weeks/months).

Those are just suggestions, you could also discuss with your doctors.