escalate child’s meds even when feeling ok???

My son was hospitalized and diagnosed with pancolitis in April 2016. Was started on 6MP, VSL3, Prednisone, and rowasa enemas in hospital. Finished up the prednisone after 3 months but Liver didn’t tolerate the 6MP so had to stop. Doctors wanted to move to Remicade but he had very few symptoms and was feeling good so we wanted to try Lialda before jumping to Remicade. He has been on 3 Lialda pills, VSL, daily enema, fiber supplements, multivitamin since July. When he switched from 6MP to Lialda in July he was technically in remission (he had not had any diarrhea or blood since leaving hospital, he calprotectin was good @48, blood work normal, and we carefully managed diet to minimize stomach discomfort--no gluten, no dairy, only cooked veggies, grass fed organic meat only, no preservatives/emulsifiers, no nuts, seeds, no HFCS).
Well two weeks ago after a high stress period we noticed some minor blood in his stool, slightly less formed stools, bit more fatigue, and increased stomach discomfort. Doctor ordered labs and all his bloodwork looks great (WBC normal, liver great) EXCEPT elevated SED, hemoglobin low, and calprotectin was 256. SO this means the inflammation is back and Dr says it just going to keep getting worse (She wants him in true remission even if he isn’t having symptoms yet).
Doctor wants to talk about putting him on remade. We are reluctant to do this because he has still had no diarrhea, no urgency, stools 1x per day, exercises daily, and though he is annoyed by diet restrictions he abides and would say his stomach causes him only minor discomfort. She says she will give us one month at 4 lialda per day (then retest) to try and see if we can get that calprotectin score down or she will push for remicade.
ANYONE HAVE ANY IDEAS OF WHAT ELSE WE COULD TRY FOR 3 WEEKS (OTHER THAN REMOVING MORE THINGS FROM HIS DIET)? Should we add in Canana suppositories in the morning (or would that be mesalamine overload given he does a nightly enema?). Any other supplements to add in that directly work on that inflammation (tumeric)? Should we double up and do 2 double strength VSL?
He is not a great candidate for Remicade because he can’t take 6MP or Methotrexate to prevent antibody formation.
Am I just being stubborn? Seems so wrong to escalate meds when he seems ok and has decent quality of life but am I just setting him up for a major flare in a couple months and being naive that the inflammation (rather than just symptoms) could be reduced without a medication change?

Thing is, your son is not feeling ok. He has a simmering inflammation. If the mesalazine doesn't take, it can only gets worse. Hopefully it will take effect though because it's a very safe drug.

I would give Remicade a try (if that's what you meant by remade). I took it without 6mp or Azathioprine. Doctor gave a shot of cortisone and that's it. I was in remission with it until I moved and had to give up treatment.

What you could try for 3 weeks: Entocort, a gut specific steroid, that might shut off the inflammation enough to let Lialda take stronger hold. I don't know if Entocort is given to children but if Remicade is on the horizon it would be worth a try.

I applaud all you are doing to help your son. Instead of removing more things diet wise how about adding daily homemade chicken broth and 4 oz of carrot juice. Fiber has not been my gut's friend so take a look at his veggies and ask if he really needs broccoli and replace it with lower fiber veggie. Potatoes and resistant starch are also very beneficial to the gut.

Best wishes.

I'd go on the remicade, as your son has a severe case of ulcerative pancolitis (impacting his entire large intestine) that landed him in the hospital, and I think you're not taking his UC serious enough and as a consequence are undermedicating him. You can give it more time, if you want to be absolutely sure it's necessary but you are risking another flare in the meantime. Often pediatric pancolitis cases warrant the strong medications early, to give patients the best chance of stabilizing uc early and keeping uc well managed.

Given that he's an adolescent male, you likely wouldn't want him on both 6MP and remicade simultaneously. Being on just the biologic would be preferred and most pediatric gastroenterologists would likely agree on that point.

Is the limited diet helping at all? Have you seen improvements within his symptoms as a result? Not everyone benefits from diet modifications, myself included. Restrictive diets are great when they make big improvements within uc symptoms. But if they don't...

imagardener2 said...
Do a search in this forum for anti-depressants and UC. A couple people reported benefits from a specific RX, perhaps a slowing down of gut but who knows, so much is a mystery about the gut which is (as you no doubt know) a big factor in emotions, sleep and so much more.

Yes, a few studies show Wellbutrin is effective for controlling and inducing remission in UC patients.

Sad when I read about young ones getting this disease.
Perhaps consider Entyvio as its gut specific & only a half hour infusion (convenient) but be prepared to wait 14 weeks to see if it works.

Wishing you strength & resilience.

I agree with Ipoop on this one. He obviously has inflammation going on and just waiting around does not work.

Why can't he try imuran instead of 6mp?? That combo is commonly used for biologics so the patient won't build up antibodies. I've been doing that for a while now and my liver is great (6mp hurt my liver, too).

Antibodies aren't a foregone conclusion with biologics. Some never get antibodies to a biologic, even without concurrent immunomodulator therapy. Some get antibodies quickly with the best concurrent immunomodulator therapy. I believe the highest odds of antibody formation is early on in the biologic treatment, if it's already been years and you haven't already got antibodies then you likely won't get them. It's easy to test for antibodies and unless they become a problem then there's no reason to discontinue a med.

Remicade/infliximab is the oldest uc-approved biologic and it's 75 percent human protein and 25 percent mouse protein. As such, it's generally a little higher odds of antibody formation than the rest. The rest are 100 percent human, and some like entyvio don't even recommend immunomodulators concurrent with treatment with current clinical guidelines. Even in the worst case scenario of antibodies, drug doses can be increased to counter act, in many cases. And antibody formation to one medication doesn't predispose one to always developing antibodies to every medication (It's isolated to one med). Some food for thought at least, and I wouldn't fixate on antibodies.

i agree with mom - try staying the course with the current meds - not sure how you know he will eventually wind up on biologics - some folks on this forum manage their UC with nothing more than mesalamine drugs - and have for a very long time - hope your son can be added to that list !

So glad mom!! I hope the Uceris will do the trick for him and then he can hold the inflammation down with his mesalamine meds. If I had to go up the med ladder I would do the Entyvio...but yes, you have to make the case for the insurance companies. Keep doing what you are doing as in being his advocate and researching and making informed decisions. I applaud you and am giving you a big hug. It is tough to be a mom and tougher yet when you have to make decisions such as this. Please continue to keep us posted on how he is doing. Best!!
B

I have pancolitis and at times my flares are pretty severe. I've had periods of no symptoms and still my scopes come back with some inflammation so I never reach true endoscopic remission.

I understand your hesitancy on going to remicade but I want to tell you my experiences. Every time my GI suggested adding something to boost me to full remission I was very hesitant. I would read side effects and think, "nah I feel great". But so far, i haven't been in front of my disease. I've simply been managing it as it comes. Now I understand after many hospitalizations the importance of catching it before it progresses. Especially with pancolitis.

I imagine the decision is so hard, and I'm not advocating either way. I personally believe I would've had a richer fuller past 2 Years if I had gone with my GI suggestions.

His symptoms were non-existent except for a recent high stress period inducing some minor symptoms. I don't know why your doctor is pushing so hard and so soon for Remicade. There are many members here who have maintained remission for years on a mesalamine like Asacol or Lialda reinforced with rectal meds as needed.

Remicade may dampen down inflammation but in the end they do weaken your immune system, while mesalamines are proven to protect against cancer. I would stay the course if you could.

It wouldn't hurt to check out /projects.propublica.org/docdollars/ to see if there are other reasons why your doc is pushing Remicade so hard. The following is an example of a doctor who insisted on prescribing Uceris to his patient even though rectal meds were working perfectly well, (he was receiving payments from the drug company).
www.healingwell.com/community/default.aspx?f=38&m=3646214

I'm not trying to sound condescending but treating a 12 year old is completely different than treating an adult. We can allow some simmering to go on if we want and manage our symptoms more conservatively but with a pre-teen boy, his inflammation needs to be under control so that his future growth and onset of puberty aren't jeopardized. I only skimmed through the previous comments so maybe this was already mentioned.

I am so happy to hear about the positive improvement. Scope every 6 months sounds nuts to me, mostly because it's expensive, and the prep is such a huge undertaking. As for gluten, that's very individual. I think you would have to test, but if you've had issues with gluten and symptoms arising in the past, it's probably better to be safe than sorry.