Can I stop remicade infusions if I have been in remission for several years?

Yes safe with pediatric patients and prescribed en mass. The lymphoma risk is more associated with immunomodulators like 6mp/imuran than with biologics like remicade/humira and often both are taken simultaneously which is why it appeared on the label). Therefore the recommendation is biologics without immunomodulators for pediatric uc patients.

Yes, I truly believe that and it is practiced in many pediatric gasterenteroligists offices across the country (to back me up on that lol). Treat strong and early with biologics to prevent disease progression and yield the best quality of life for those who will live the longest with UC. Pretty clear-cut to me. Asacol has some pretty bad and equally rare side effects listed (liver issues, blood issues, heart inflammation, etc.), yet it is these darn biologics that scare people silly.

Do you drive a car? There's much, much higher risk of death via automobile than through adverse affects of biologic medications.

Even rectal meds are 10 percent systematic (as are delayed release asacol) and they can cause liver damage necessitating a transplant in the worstcase scenario if not caught through blood testing. I'd count that as pretty darn serious. Again rare odds as it is with the biologics. Nearly everything has rare and serious reactions.

"Treat strong and early with biologics to prevent disease progression and yield the best quality of life for those who will live the longest with UC. Pretty clear-cut to me."

so how many years exactly have they been using this method on pediatric patients - long enough to have established it's safety over the course of whatever lifetime they may have ?

Coffeemate said...

Over 90 percent of oncologists have admitted in private surveys that they would not accept for themselves the chemotherapy that they prescribe to their cancer patients. I wonder how many GIs would give their children a biologic as the initial treatment for Chrohn's and UC.

Please supply a source for this claim. Or better yet, do some research from trustworthy sources and you will see that this is completely bogus.

beave said...
1. The biologics aren't completely safe, but they are safer than under-treated IBD. And they are safer than steroids. And they are even safer than imuran/6mp.

That is not the issue. The issue here is that people are implying that the dangers and frequency of side effects from biologics are no worse than the side effects of mesalamines. And everyone knows that is false. Mesalamines do not have “black box” warnings associated with them.

Post Edited (IamCurious) : 9/13/2017 6:09:03 PM (GMT-6)

iPoop said...
Again, cost is the only barrier preventing biologics from being a 1st line treatment for UC...

Well, yes and no.

When we talk about biologics, we tend to lump them all together. But we should probably distinguish the anti-TNFS from the newer ones like Entyvio and Stelara.

We should also distinguish mild UC from moderate-to-severe UC.

In mild UC, the first line of treatment is mesalamines, regardless of cost (ie, even if anti-TNFs were as cheap). Entyvio and Stelara are showing really good effectiveness AND really good side effect profiles (better than anti-TNFs), so it's possible that with a couple years more data, those could theoretically be first line treatments even for mild UC - IF cost were no issue. In mild UC, the anti-TNFs would not supplant mesalamines for first line treatment because of their risk of side effects being greater making them not worth the risk.

But in moderate to severe UC, yes, biologics should/would be 1st line treatment and cost is the main reason they sometimes aren't. At the conference two "famous" researchers debated whether Remicade or Entyvio should be the 1st line treatment for moderate to severe UC. Remicade has stronger data and more history, but more risk of side effects. Entyvio is very promising but doesn't quite have the data and history, but its side effects appear less than anti-TNFs.

They also said that as more and more data has been compiled, that the recommendations of using monotherapy with azathioprine or 6mp are going away. Aza/6mp have only modest benefit by themselves, but have risks of serious side effects. Just not worth the tradeoff. But they do still strongly recommend aza/6mp with an anti-TNF, because they help the anti-TNF work better, have better pharmacodynamics, and prevent antibody formation.

Post Edited (beave) : 9/13/2017 6:49:25 PM (GMT-6)

Ideally there would be a test (or tests, like genes plus microbiome) to determine which pediatric patients would have a mild lifelong course of UC and which patients would have a really rough life with it. Then they could treat accordingly. Unfortunately such tests don't exist, well, they do and are being worked on, but right now they aren't nearly accurate enough.

So without knowing that, all we do know is that early age at diagnosis is a risk factor correlated with more severe disease progression.

For pediatric patients who present early with more severe disease, hit it hard and early, yes.

For pediatric patients who present with more mild disease, but are known to be at risk of having it turn severe simply because they got it young, what to do is a tough call and controversial. If you treat early, you might be throwing away $$ and risking side effects. If you wait too long to intervene with stronger meds, you may have missed the 'window' in which treatment works best, ie, it has been shown if too much damage is already done, then the treatments are less likely to reverse that damage and lead to remission. So what to do necessitates a long conversation with patient and family and an explanation of risks and benefits of all approaches.

I am so sorry about your child. Nobody is second-guessing your decision. A tough choice and I would have made the same decision. Sometimes biologics are necessary.

But my point in this thread is about looking for a 2nd opinion after a doctor prescribes biologics from the get-go even when milder meds would be just as effective.

There's an undue amount of fear on biologics that only delays treatment, causes undue suffering and reduced quality of life, and disease progression. I hear such fears repeated here on the forum (their dangerous chemo drugs, use them only if everything else has failed). The fact is medical doctrine is changing to using them earlier and earlier, and so much so that the top-down approach (what I've been talking about starting with biologics) is gaining wider and wider acceptance, and that will only continue over the years. Pediatric patients are the most at risk and the first it is applied to. Are there some very mild cases in which only mesalamine is recommended? Sure, there's always some discretion and no black and white to anything.

But take all risk out of it for a second and ask the simple question: If you could take the wind out of UC's sail early on, put a patient into a remission early, and prevent the many months or years of going up the medication ladder slowly, waiting for a response, and see the UC spread in extent and severity during that time, then would you? And that's what is in the root of it all to help folks out and give them the best prognosis that is possible. Once UC has gone on for years, taken root and gotten much worse then it is harder to get a handle on when it is a medication of last resort. And as beave said, can the damage be undone at that point? I've wondered if I took biologics from day one how much easier my path with UC would have been, skipped some really, really bad flares that took a year to recover from. Sure flares still happen to us all regardless of treatment and they are much milder and shorter when we're well controlled.

Can a parent or patient object? Yes, of course. It is a recommendation and the other meds are still available if someone is dead-set-against it. I feel a lot of it is an education case: what exactly are the risks versus the benefits? Yes there is a black box warning and lets talk about it, etc. And once you put it into perspective it isn't as bad as it seems. And it is very much true that Entyvio and newer biologics are having less reported issues than older ones.

Another thing that biologics help with is they deal with the non-compliance issue that's rampant with chronic illnesses. Especially when you talk about anti-inflammatory mesalamines that are 8-12 pills a day, taken multiple times a day, unpleasant and easy to forget to say the least. Odds are much better that I'll come in every 8 weeks for a Stelara, Entyvio, Remicade infusion. What does non-compliance do? Same thing disease progression, flares, etc.

It's a culmination of a lot of useful ideas I feel in the top down approach. If it can be more selectively applied to severe and moderate severity cases then that's great. I once started as a mild case though, so there's no guarantees you're going to catch all by skipping them though... I'd call it smart more than wasteful or dangerous. Although I never expect to convince everybody, especially those who choose to follow a strict non-medical approach themselves.

Treat strong and early with biologics to prevent disease progression and yield the best quality of life for those who will live the longest with UC

If it doesn't enhance to QOL of the patient then at least it will improve the QOL of the doctor who will charge, on a regular basis, thousands of dollars for each infusion. The generic Balsalazide that keeps me in remission is very inexpensive.

Louiseluck said...
Treat strong and early with biologics to prevent disease progression and yield the best quality of life for those who will live the longest with UC

If it doesn't enhance to QOL of the patient then at least it will improve the QOL of the doctor who will charge, on a regular basis, thousands of dollars for each infusion. The generic Balsalazide that keeps me in remission is very inexpensive.

My son's doctor doesn't see any of the money from the Remicade infusions. That's done at and billed by the infusion center/hospital. I would imagine that's the way it's done most places. The entity that benefits the most financially, by far, would be Janssen (the company that manufactures Remicade).