DS going off Remicade

[kernelmom3]

Hi all, just wanted to vent (and hopefully get some reassurance)! After DS had his resection last July (2021) he stayed on Remicade to get through his senior year of college. He HATES Remicade! He is on the spectrum and has hyper fixated that it will give him cancer (no matter what facts/data you show him). He likes to stay in complete denial about his CD because he already feels different than everybody because he’s neurodivergent.

So when he had his colonoscopy last month and the biopsies came back fine his GI said he can come off Remicade. He went over the risk/benefits of staying on and going off and told DS he HAS to keep up with his appointments and do labs and fecal calprotectin twice a year. Doc said the location of all DS’s flares has been removed but because of where it was you can “have a fire” going on and feel totally fine …until you are having an emergency.

I’m scared and really wish he would reconsider but I have to respect his decision and just do my best to make sure he makes and keeps his appointments. Wish us luck!

 

[Scipio]

Good luck! I respect your son for making his own decisions, but I worry that this is going to be difficult with increased risk of recurrence.

 

[kernelmom3]

Good luck! I respect your son for making his own decisions, but I worry that this is going to be difficult with increased risk of recurrence.

I worry about recurrence too and tried to argue that it’s only every 2 months and if it ain’t broke don’t fix it. It was like talking to a brick wall. Fingers crossed!

 

[my little penguin]

Is he willing to step down therapy ?
In other words drop remicade but take methotrexate instead for a while ?
The cded diet (formula and fixed diet
No side effects on that one )
It’s harder when they are young adults and add in the fixation on “what if “ is tough .
Just so your not going from a high level drug to nothing .

 

[kernelmom3]

I brought up step down too and he wants NO meds. He said he was going to try to modify his diet to be better so we’ll see….

 

[crohnsinct]

Oh my! I feel for you. I imagine you guys have shown him all the studies/papers that show the risk of relapse with med withdrawal. Tgat said, there is a very small population that are able to withdraw meds. Bi will pray that he is in that minority and if he isn’t that he keeps up with his follow up resting and appointments.
Adult kids are so much fun.

 

[Scipio]

A lot of GIs don't worry all that much about a patient who insists on going off meds. It's often a case of "Don't worry. He'll be back when his disease comes back with a vengeance." Whether that confidence of the patient's return also applies to those who are on the spectrum I have no idea.

 

[asadmom]

A lot of GIs don't worry all that much about a patient who insists on going off meds. It's often a case of "Don't worry. He'll be back when his disease comes back with a vengeance." Whether that confidence of the patient's return also applies to those who are on the spectrum I have no idea.

With frequent and proactive monitoring, wouldn't he be able to know before "Crohn's comes back with a vengeance"?

 

[kernelmom3]

With frequent and proactive monitoring, wouldn't he be able to know before "Crohn's comes back with a vengeance"?

My first time ever hearing about CD was when my sister was diagnosed 25+ years ago when she was VERY sick and had a temporary ostomy and a resection. At the time they didn’t have any options for maintenance so she’s never been on any meds for it. She’s had three kids and lives a normal life but definitely has her days (though she’s never needed further surgery). I know every case is different but my hope is that with the calprotectin and labs every 6 months he will be on top of it. I really have a hard time with his decision but it is just that…HIS decision. We’ve always let him have the final say since he was diagnosed at 14 but we did mostly TELL him what the treatment plan was and he just went along. It’s so hard to let go!

 

[asadmom]

My first time ever hearing about CD was when my sister was diagnosed 25+ years ago when she was VERY sick and had a temporary ostomy and a resection. At the time they didn’t have any options for maintenance so she’s never been on any meds for it. She’s had three kids and lives a normal life but definitely has her days (though she’s never needed further surgery). I know every case is different but my hope is that with the calprotectin and labs every 6 months he will be on top of it. I really have a hard time with his decision but it is just that…HIS decision. We’ve always let him have the final say since he was diagnosed at 14 but we did mostly TELL him what the treatment plan was and he just went along. It’s so hard to let go!

Does he also not want to do testing? As long as there is a good monitoring protocol in place, I would think either a medical intervention or a drug holiday would be quite a straightforward decision since you all will have labs to make an objective decision, right? Maybe I am missing something?

 

[kernelmom3]

Does he also not want to do testing? As long as there is a good monitoring protocol in place, I would think either a medical intervention or a drug holiday would be quite a straightforward decision since you all will have labs to make an objective decision, right? Maybe I am missing something?

He is on the fence about testing and feels like a calprotectin is “degrading” but has agreed to it (and labs) for now. He’s still living at home and saving up money so I know while he’s here he’ll be staying updated with testing. I don’t know what will happen when he moves out and lives on his own eventually but hopefully he’ll see that twice a year isn’t a big deal and will be used to participating more in his healthcare.

 

[asadmom]

He is on the fence about testing and feels like a calprotectin is “degrading” but has agreed to it (and labs) for now. He’s still living at home and saving up money so I know while he’s here he’ll be staying updated with testing. I don’t know what will happen when he moves out and lives on his own eventually but hopefully he’ll see that twice a year isn’t a big deal and will be used to participating more in his healthcare.

Yeah! Give him a chance. I rely a lot on testing especially if the patient is doing fine with no symptoms. His doctor is nice. Our doctor would make you do calpro every month if you are not on medication.

 

[Scipio]

One technical note: fecal calprotectin is not FDA approved for monitoring IBD in the US. It is approved only as an aid in distinguishing IBD from IBS. Some GIs may elect to order it for monitoring anyway, but that is considered "off label" use and thus "experimental," which gives insurance companies all the excuse they need to refuse to pay for it. Hopefully you won't run into this problem.

 

[kernelmom3]

One technical note: fecal calprotectin is not FDA approved for monitoring IBD in the US. It is approved only as an aid in distinguishing IBD from IBS. Some GIs may elect to order it for monitoring anyway, but that is considered "off label" use and thus "experimental," which gives insurance companies all the excuse they need to refuse to pay for it. Hopefully you won't run into this problem.

So far it has been paid for but thanks for letting me know! Prometheus Labs (for Monitr and Remicade level) is NEVER covered for us no matter how many times I’ve appealed. I believe they offer one “free” test yearly (where we don’t get billed) and some assistance to make the out-of-pocket cost cheaper but it really bugs me that it’s not covered yet!

 

[asadmom]

One technical note: fecal calprotectin is not FDA approved for monitoring IBD in the US. It is approved only as an aid in distinguishing IBD from IBS. Some GIs may elect to order it for monitoring anyway, but that is considered "off label" use and thus "experimental," which gives insurance companies all the excuse they need to refuse to pay for it. Hopefully you won't run into this problem.

Oh? What is the correct monitoring test that is not a scope then?

Sorry what I meant to ask was in between the scopes, what are the right markers we can utilize to monitor the disease activity that are easy to do?

 

[kernelmom3]

Oh? What is the correct monitoring test that is not a scope then?

Sorry what I meant to ask was in between the scopes, what are the right markers we can utilize to monitor the disease activity that are easy to do?

i can only speak to what our GI’s suggest but I know scope is probably the best way to monitor inflammation. For my kids and husband (and all the other family members of ours that have CD, some on biologics and some on no meds at all) we use calprotectin and labs and maybe an occasional MRE to get a non-invasive estimate.

 

[asadmom]

i can only speak to what our GI’s suggest but I know scope is probably the best way to monitor inflammation. For my kids and husband (and all the other family members of ours that have CD, some on biologics and some on no meds at all) we use calprotectin and labs and maybe an occasional MRE to get a non-invasive estimate.

Correct that's what we have been doing as well. Curious on why calpro is not fda approved and what fda thinks is the right noninvasive monitoring protocol.

 

[Scipio]

You are correct that colonoscopy is the best monitoring tool for IBD. But patients hate colonoscopy, and you may want to monitor disease more frequently than scopes are commonly done, especially for someone going off meds and thus is at significant risk of a relapse. The main lab tests that are FDA-approved for monitoring IBD are CRP and sed rate. Unfortunately both of those are relatively insensitive tests. They work for the patients they work for, but they don't work very well or at all for many others. For example, my CRP is always down in the normal range no matter what my Crohn's is doing. That test just doesn't work in my case.

Fecal calprotectin is not FDA-approved for monitoring, and the Monitr and biologic drug monitoring tests are not FDA-approved at all, because the manufacturers have not conducted the rigorous and often expensive clinical trials of the tests that FDA requires for approval. So the companies get by with the quicker and easier to prove "distinguish-IBD-from-IBS" clinical claim for calprotectin and with no FDA approval at all for Monitr and the drug tests - relying pretty much entirely on "off-label" use to drive sales for the tests.

 

[crohnsinct]

I have a whole thread on here somewhere on this exact topic complete with the appeal letters etc to get our insurance company to cover calpro. insurance companies don’t cover it unless it is coded as “diarrhea” or something like that. I have the exact cpt code in that thread.

The thing that really peeved me is the cost is $250 but the negotiated insurance rate is around $30. I told the lab my insurance didn’t cover it and asked for the $30 rate and they said no. They said they only way you can get that rate is if you don’t have insurance. Umm well I don’t for that test! Bizarre.

So we ended up using the lab at our GI’s hospital and he had the rate negotiated down.

We have Aetna and they started covering calpro through lab Coro and quest last year as a monitoring test so the tide is turning.