Panicked Mom

[Jackman]

Hello Everyone!
It's been a long time since I posted. Typical...things were great, so we were living life! Jackson is now 17, driving and beginning to go on college visits. He's a senior and still swimming competitively. On the outside, he looks and feels amazing.

He's been on Remade for 2.5 years and achieved and has maintained remission since the initial infusion. Stool studies in August continue to show no inflammation.

In March 2017 we noticed that his liver enzymes were slightly elevated. They continued to rise through the June infusion and then began going down again. All other labs were normal, except for a positive anti-smooth muscle antibody. All other antibodies were negative, total bili normal etc. Feeling great with no Crohn's or liver disease symptoms. Ultrasound normal...

Liver biopsy in August and it came back as chronic hepatitis and suggested autoimmune, viral, or drug-induced, but favored autoimmune. My GI is concerned that given the labs, she believes it is drug induced, rather than autoimmune. She doesn't want to put him on Imuran due to the risk of dual Remi/Imuran side effects in adolescent boys. She believes it is the remicade and wants to switch to Humira.

Liver enzymes were a high of:
AST 200
ALT 325

but are now back to
AST 54
ALT 77

I am so scared:
1.) What if it is AIH and he still needs to go on a short course of Steroids and Imran, and now we've lost Remicade.

2.) What if Humira doesn't work or causes the same liver issues!

I feel like I'm back to square 1

And I've heard that the Humira shot hurts!!!

I'm so frustrated and scared...HELP!

Angel

 

[Maya142]

Have you considering getting a second opinion?

The Humira shot does hurt, but there are ways to make it less painful. My daughter found the syringes much less painful than the pens, because you can control the speed of the injection. We used ice before and after the shot. We did the shot while she was distracted - while watching TV or asking questions. Both my girls preferred doing the shots themselves, which gave them some control - considering your son is going to college soon, it may be a good idea to teach him how to do the shots.

There are some docs that will allow you to add Lidocaine to the shot, which helps with the burning.

As for what if Humira causes the same problem, then I would guess they will switch to a different kind of biologic - such as Stelara or Entyvio.

You do have options, which is GOOD.

I know it's scary to give up a med that is working though - which is why a second opinion may give you some peace of mind. Both CHOP and BCH are not too far from you and have the best GI depts.

I'll tag some other parents to see if they have ideas:
my little penguin
Kimmidwife
Tesscorm
Jmrogers4
Mehita
pdx
Jenn

 

[Jackman]

She actually was Dr. Baldassano's resident at CHOP, and sent the Liver Specialist the results for a second opinion. So They concur with the findings regarding the mild damage to the liver, but also said it could be AI, Viral, or Drug Induced. She's pretty thorough when it comes to that and did review a few studies. She just feels like the labs don't really support AI. TO be honest, its been my gut feeling that it was the remade since June...

 

[Maya142]

So the doctor is not at CHOP - but trained there?

Sometimes just an entirely new set of eyes helps. It can't hurt and it may help a lot. We have done lots of second opinions and generally find them very helpful.

If you do get a second opinion, I would do it at a totally different hospital from the one you are normally seen at. Both Boston Children's and CHOP do record reviews, so you wouldn't even necessarily have to go. There is also Cincinnati Children's.

In NYC, Mount Sinai is another good option. Dr. Dubinsky specializes in pediatric IBD.

 

[Jackman]

Sorry, not clear. She is by me at the large hospital in our area. When J.was initially diagnosed I wanted a second opinion and she suggested CHOP too. They suggested Humira right away! lol But it was 4 years before we went to Remicade. Anyway, the liver specialist at our hospital reviewed it and made a report/recommendation and then she sent to CHOP for a second opinion. I completely trust her. She has been amazing the last 6 years! But yes, a second opinion may make the switch easier.

I have heard good things about Humira and its success with Crohn's though. And I'm sure its more convenient than a 5 hour infusion process, he hates missing school... Hoping the pain free version comes to US soon!

 

[Maya142]

The pain free version was supposed to come to the US this summer...not sure what happened . My daughter is also waiting for it!!

A second opinion always helps me with tough decisions - even if it's just confirming your doctor's plan, then you will know that two doctors plus a liver specialist believe it is the right next step for your son.

Humira is MUCH more convenient. My girls hated it at first, but when they realized it was 10 seconds of pain in return for feeling better all week, they got used to quickly. Both my girls needed weekly shots, but generally you start out with biweekly and if a dose increase is necessary they go to weekly.

The loading dose was very tough for my daughter - it is 4 shots on day 0, and 2 shots on day 14 and then you go to maintenance dosing, 1 shot every 2 weeks.

I'm not sure if they will do a loading dose since he's already in remission, but just wanted to warn you. 4 shots at once is not fun. But, my daughter said doing 4 shots at once made 1 shot look easy .

We used the pen for years because my daughters did not want to see the needle. I kept trying to convince them to try the syringe since parents on here have said it's less painful. My older daughter finally switched about a year ago and was shocked by how much less the syringe hurt!

The pen is definitely easier to inject, but it injects the med faster so it burns more, according to my daughter.

 

[Jmrogers4]

Dealing with similar issue with hubby, same thing with hepatitis, had been on Imuran for about 15 years pulled him off Imuran to "not make things worse" begin discussions for liver transplant but liver levels dropped to just slightly elevated and now we are at just wait and see. He is currently not on any medication for Crohn's and GI will treat as needed if he flares with most likely Humira or stelara according to GI but he is 50 and not 17 and will voluntarily go EEN if needed. I would be reluctant to pull my 18 year old off all meds, he is currently on Remicade but we are definitely watching liver levels more closely since father's new diagnosis.
I have heard of people going back on remicade with the use of pre-meds and steriods, just greater chances of having a reaction if you go on and off.