Is Remicade working or not?

[Brycen's Mom]

So I am new to this forum, but am just getting to be very frustrated with our doctors. My son will be 7 on Thursday, we have been on Remicade since August of 2015. We have been hospitalized three times since then. twice in 2016 and once in 2017. From what I understand he is on the highest dose of Remicade at this time at 4 week intervals. He still has bleeding and mucus with diarrhea at least 3 times a month but his labs look good. The last set of stool testing was 2 weeks ago, everything looked good. But then last Wednesday he started having bloody stools again. He has been on Prednisone now since October and has developed secondary adrenal insufficiency. We haven't started the taper yet because they want to do more stool testing and now have me take pictures of his stool prior to beginning the ween off of the prednisone. My issue is, why are we continuing treatment if it doesn't seem to be working. I feel like we should be in remission or at least have been in remission at some point after 2 years. Or am I just over reacting, because sometimes my son's doctors tend to make me feel that way.

 

[Maya142]

Hi and welcome.

Sorry to hear your kiddo is still suffering. That is a LONG time to be on Remicade if it's not working. I don't think you are over-reacting, the goal is remission and mucosal healing to prevent damage to his intestines and complications like surgery, abscesses, fistulae etc.

Have you considered a second opinion? The three big pediatric IBD centers - Boston Children's, Children's Hospital of Philadelphia and Cincinnati Children's. Some will do online record reviews so you don't have to make the trip, though often, making the trip is worth it. You could also get a second opinion somewhere closer to you.

It sounds like you have tried Remicade - at the highest dose and frequency - and it still is not working. There are other options, so I'm not sure why your doctor has not moved him to them - Humira is another anti-TNF, Stelara and Entyvio are biologics with different mechanisms.

My daughter also has secondary adrenal insufficiency from steroids and it is tough to deal with. Let me know if you have any questions.

I'm going to tag some parents who may have additional ideas:
crohnsinct
Clash
my little penguin
Pilgrim
pdx
Jmrogers4

 

[Jmrogers4]

Have they done scopes/imaging or just labs? My son's labs are always within normal levels despite having inflammation going on which was only seen through MRE. We've just learned to read his labs now as what is normal for him ESR of 6 and below is great, things start going south after that, a 9 showed up as high levels of inflammation in small intestine as seen through MRE. MRSA infection registered as a 15 (normal levels for lab is 15 and below). I keep a spreadsheet of labs/symptoms and have been able to track when it gets to 7-8 that symptoms creep in.

 

[crohnsinct]

You are not over reacting! Three hospitalizations since dx?! I would say the drug is not working. I also would like to know if the GI has done any imaging or scopes. Sounds like they need a good look at things.

I don't get stool testing while on steroids. If it comes back normal well that just means the steroids are handling the inflammation. That tells you nothing about whether or not Remicade can handle the disease.

Bleeding is a pretty obvious sign of Crohn's (although my daughter's GI has us doing a C Diff test...I don't think that is it with her but I will play nicely) and bleeding while on steroids doesn't sound good in my book.

My daughter has also been on steroids for a while for a flare. Her doc is mentioning adrenal insufficiency with her as well. One of the symptoms of it is diarrhea so I would wonder a little if the diarrhea he is experiencing is IBD or maybe could be from the adrenal insufficiency. Also my daughters GI is mentioning the possibility of small intestine bacteria overgrowth as causing some of her BM frequency/urgency etc.

I would seek a second opinion. Children's Hospital of Atlanta has a very good IBD center. Perhaps you could make the trip there?

Good Luck! Soldier on mama! You know your son best!

 

[Maya142]

How much Prednisone is he on? If he is on more than 4 mg (which is the physiologic dose - the amount the body produces), then he should not have any symptoms from adrenal insufficiency. Plus, bleeding is not a symptoms of adrenal insufficiency. But it could be one of CDiff or an infection - have they done stool tests for infection?

My daughter has had diarrhea with adrenal insufficiency but only once she was off steroids completely or when she needed a stress dose of hydrocortisone.

 

[Brycen's Mom]

So we are currently on 10 MG of Prednisone daily. His last scope was in the beginning of 2017. He did have some inflammation at the time. I'm not sure why they keep ordered stool studies while he is on the steroids but I just do what they ask. They always do a C-Diff even when I know that is just waste of me having to dig in poop again!. At one point they tried to tell me that this could just be his norm, which I told them at time I refuse to accept. The last hospital stint we were in for a week, got out the day before Thanksgiving. The attending we saw while there was not our usual doctor and he had said he would suggest to our doctor that it might be time to give Humira a try. She said she doesn't feel like we are there yet?

Brycen also sees an immunologist who supposedly was going to be working with Boston Childrens but never actually did anything. We started seeing them because Brycen has allergies to 4 antibiotics as well as sulfa drugs, and he started to develop Pyoderma gangrenosum which was causing him a lot of pain. We have new doctor but wont see her until February.

It's been a long road!

I'm really sorry that you all have to go through and deal with similar things. I know how hard it is.

 

[crohnsinct]

I think immunology is another good idea as he was dx'd at 5 and I think that is still considered Very Early Onset.

Have they taken Remi levels and tested antibodies? Not thatches really matters but if he has sufficient levels of the drug in his system then increasing the dose etc is less likely to work and he may just be a non responder. Also if he has antibodies that might also get you a switch of med faster and easier.

Good for you for not accepting "this just may be him" statement. His situation is not good at al! There are so many other dug options. I would EVER sit back and accept being hospitalized once a year for Crohn's. Inflammation left untreated run a very high risk of surgeries. You absolutely need another opinion. How about that nice attending who suggested Humira? Did that info ever get to your GI?

 

[Maya142]

Since he is currently on 10 mg, which is more than the physiologic dose, he shouldn't have any adrenal insufficiency symptoms. Once he tapers, which they will do very slowly, then you may have to watch for symptoms.

Usually they will keep him on the physiologic dose of Pred or hydrocortisone (we were told hydrocortisone is used because it has a shorter half life, which gives the adrenal glands some time to "wake up") for a while. It may take a long time for his adrenal glands to wake up - we were told months to years .

Your poor kiddo - I am sorry it has been so tough. Is there any way you can switch to the attending you saw before Thanksgiving? I know switching doctors within a practice is hard, but I also know parents who have done it.

I would definitely get a second opinion. It is crazy to have him suffer like this when there are other options - GOOD options.

Very Early Onset IBD does tend to be hard to treat. It may be worth making the trip to one of the big IBD centers like CHOP or Boston Children's. I know at CHOP they are doing a lot of research on VEO IBD.

 

[Jmrogers4]

Keep pushing I would not accept as normal. My son's GI has thanked me for pushing as my son had delayed growth and development and I knew his development wasn't normal, he should be taller and farther along in puberty at the time but GI wasn't too concerned (figured he was late bloomer, and going to be short)- my mommy instinct told me otherwise and that we were missing stuff. After lots of nagging from me and sending us to endo for further testing he did some more imaging (MRE which showed massive inflammation in small intestine). Low and behold after starting on remicade he grew 9 inches in one year went through about 3 years of puberty in the same time and I can say he is truly in remission now (remicade for 4 years). He is a freshman in college and is 6'1" tall (taller than his GI). GI still kind of shakes his head everytime he sees him and says I guess he really did need remicade. I figure they see so many children and try to fit them all into the same box but you know your child best.

 

[Fox188]

I was on Remicade at about age 13-14 it worked for a little while but did not seem worth the days off school to go stay at the hospital for 4 hours. And it was probably even harder on my parents having to see their kid get IVs all the time.
Eventually, it proved to not work as i was still having flares. Later started Humira with Imuran, Prednisone, Ferrous Sulfate and Vitamin D in 2015. After keeping my Prednisone at a really low dose for a while i was able to discontinue Pred. and lasted about 1 year and 4 months till another incident.

Wish you the best and God bless.

 

[pdx]

So sorry about all that your son and family are dealing with. I would be frustrated with your doctors too, and agree with the comments above about getting a second opinion. My daughter's doctor is aggressive (but still careful) about treating any symptoms and never ignores our concerns or treats us like we're overreacting.

I hope that you can find a doctor that you trust and an effective treatment for your son.

 

[Brycen's Mom]

So, I actually started calling around last week about getting a second opinion. I had discussed going to Boston with our GI, but my Florida Insurance won't cover anything. But Boston Children's does some great research there on VEO IBD. There is a children's hospital in Jacksonville that we might try, or John's Hopkins in Orlando. I just have gotten to the point with our current doctors that I just don't feel like they are looking for the right thing. Like they made a decision and done.

Thank you so much for all the wonderful thoughts.

 

[Maya142]

What about a record review by Boston Children's? I wonder if that would be covered because you wouldn't actually have to go there - just send his records.

One of the moms here is in Florida and has a great GI she likes, I'll tag her: Dancemom

Another thought - have you ever considered Exclusive Enteral Nutrition (EEN)? It is a formula only diet for 6-8 weeks (usually) which induces remission. Some doctors allow 80% formula and 20% food which is easier on kids and for many kids, it still works.

It could get him into remission but you would still need a different maintenance medication to keep him there. But it would be a good bridge until you can get him on to a different maintenance medication that works.

 

[crohnsinct]

Excellant suggestion Maya! As a matter of fact, now that I think about it, at dx my older daughter was on steroids with Remicade for 4 months and every time we tried to taper her Crohn's symptoms came back. She got pretty bad and the GI suggested said while Remicade was doing the heavy lifting it wasn't getting her to remission. He suggested addingMethotrexate to the therapy but we added EEN instead and that got her to remission and Remicade was able to take over from that point on.

 

[Maya142]

EEN can be done by mouth (drinking the formula) or by tube. Some kids can tolerate polymeric formulas (like Boost, Ensure, Pediasure) - those are most palatable. Other kids cannot tolerate them, and need semi-elemental or elemental formulas which are more broken down and easier for the gut to digest.

Semi-elemental formulas would be Peptamen Jr and Pediasure Peptide. They come in different flavors. They are less palatable than Ensure/Boost, but many kiddos are able to get used to the taste. My daughter was able to get used to chocolate Peptamen Jr but was unable to drink enough to maintain weight, much less gain weight.

We went to an NG tube eventually - she inserted it every night and removed it in the morning. She was VERY against getting the tube in the beginning, but after a rough first night, she got used it. Now she says it is much easier than actually drinking the formula.

With little kids, the NG tube is left in, usually. It's thin - like spaghetti - and once they get used to it, it's not uncomfortable. It sounds a lot more intimidating than it really is.

Another advantage of EEN or even supplemental EN, is that it will help with growth and weight gain, as well as nutrition.

 

[Brycen's Mom]

I have actually never heard of EEN, but plan to look into it!

 

[my little penguin]

Tagging dancemom
Her Dd is in Florida
I think at neumours

Emory at Georgia does genetic testing for veo ibd as well as diseases that mimic itlike cgd
Takes three months to get results

More later

 

[Farmwife]

Hi and a late welcome.
My Grace was dx at 3 but it's almost 9 now.
I had to push just to get answers for Grace.
Like you I wouldn't accept "just the norm" for my girl.
Grace also had addreanal issues but
hers settled rather quickly but
still took a year to wean off of pred.
And another year of stress doses of pred
when she was ill.

We also sought a second opinion from Mayo Clinic.
I'm glad we did. It was peace of mind for me.

 

[DanceMom]

We are in Florida. We see GI at Nemours in Orlando and Immunology at USF Allergy/Immunology which is at JHACH in St. Pete. We use Nemours for the ER, inpatient stays, and testing (minus labs). I can't say enough good things about Nemours. Where are you located?

 

[Harout20]

I am currently on Remicade and Here is how I feel. 30 years old now, and been suffering since 20's.

According to my labs, my doctor claims everything is wonderful. No signs of inflammation per blood test but i am feeling off!

My stomach/gut hurts more often now. I take some pills for that which tends to work as long as im taking it but does not heal it.

My joints are hurting while having extreme muscle weakness. typing this is starting to become a challenge.

Cold/Flu on top of that. LA got hit with a flu and its not going away.

Remicade if working should take care of joint pain/and no gut issues. However it does not seem to be working.. Any thoughts?

 

[crohnsinct]

Harout20 - you may get more attention to your question if you started a new thread.

Have you had a fecal calprotectin test? Sometimes blood labs can be perfectly normal but they are not very indicative of what is going on at the mucosal level.

 

[Harout20]

No I have not tried that test. I will consider posting a new thread thank you.

 

[crohnsinct]

CRP and Sed Rate (the traditional markers used to determine inflammation) are not specific to the digestive tract. They show general inflammation in the body so they could be raised with a healthy bowel (think colds, flu etc). They could also be normal but there could still be mucosal damage.

It is an easy test, extremely reliable and very specific to the guy. I would ask about it and see what those results are. If elevated then it will be obvious to your physician that something in the treatment plan is not working. The issue will be what your physician considers elevated. Most labs use around 167 as a cut off but for surveillance of established Crohn's some docs will not make a change unless numbers are greater than 200 or so. Either way it is a great tool.

Good Luck!