If everything looks good, Dr. wants to stop Remicade.

[lenny]

We saw a new doctor a couple weeks ago and he said that my son needs to have a colonoscopy (he's right, as it's been over 3 years) and he said, "If we get in there and everything looks good, we can take you off Remicade. But, if things look bad, we'll know the Remicade isn't working and we will need to put you on something else."

It was my understanding that my son would be on Remicade until it stopped working. This doc wants to take him off of it, as if Remicade has cured him.
Part of me would love to have my son off of it, but this is crazy, right??

My son has severe Crohn's disease. At 16, he lost so much weight, he nearly died. The nurses said, he was the skinniest patient that they'd ever seen. Remicade has helped him put on and maintain weight, have energy, and though he still has symptoms of constipation mainly, feels mostly normal. He's been on Remicade since April of 2015.

People don't get taken off Remicade because it's working, do they???

 

[Maya142]

No, they typically stay on it till it has stopped working. There is data that shows that IBD patients tend to relapse within several months once they are taken off Remicade.

Some doctors do like to decrease the dose or frequency if the patient is doing very well, but most of the time, patients stay on it if they are doing well.

I'll tag my little penguin and Clash -- they may know more.

 

[ronroush7]

I am convinced that the reason I ended up with an obstruction and needed a resection was because I took myself off of Remicade.

 

[lenny]

This kind of makes me think this doctor doesn't know what he's doing.

 

[aypues]

The doctor sounds totally out if it. Colonoscopies dont even show disease in the small intestine anyway. Plus going off it can make you develop antibodies to it so if you flared up after awhile it might not work right again.

 

[ronroush7]

I would seek a second opinion.

 

[my little penguin]

If remicade is working you shouldn't find disease on a colonscopy
I haven't heard of taking anyone off remicade if they have a clean scope
Ds has had yearly clean scopes while on humira for the past 4 years and no mention of stopping it
Antibodies are more likely if you stop biologics
Can you get a second opinion ?

 

[northwesterner]

Once upon a time, many many years ago, Remicade was frequently used as a short term medication, often to close fistulas. It was given as a series of three infusions, eight weeks apart (no loading doses).

If it did what it was supposed to do, it was discontinued and the patients would go back to mesalamine/6-MP/methotrexate for maintenance.

This has not been the standard of care with Remicade for many years. For the majority of patients, it is used to both induce and maintain remission.

There's a lot of reasons not to discontinue, which can be found through a search of this forum. If it is determined there is a response to Remicade, but not remission, well, that's a whole new can of worms.

 

[Clash]

I agree with the all the above. When remicade was used in an episodic manner, early on, it was proven the chance of building antibodies to it were much higher. So, I wouldn't throw a med to the curb if a colonoscopy proves it's working, especially biologics since there is the potential to create antibodies.

Now, my son did have some response to remicade but not complete response that leads to remission. Still, we adjusted dose, schedule, added mtx (and tweaked mtx dose) over a period of time in an effort to not have to throw remicade to the curb. So even if there is still sign of inflammation I would tweak things and add a med before giving remicade up altogether.

It does seem even as late as last year I've seen posts from members that are from the UK that talk of their GI or the NHS stopping remicade if scopes after a set time show remission. But, even then I think their GIs can speak to further usage. I think this has more to do with their Healthcare system and how it's set up. I wish I could remember some of the members user names so I could tag them but it's been quite awhile. I think valleysangel92 may can speak to other though I don't think she has been through that process. Needless to say, all studies, so far, have shown stopping remicade creates a higher chance of antibodies and commonly leads to a flare of active disease.

I would get a second opinion.

 

[northwesterner]

So, I wouldn't throw a med to the curb if a colonoscopy proves it's working, especially biologics since there is the potential to create antibodies.

So even if there is still sign of inflammation I would tweak things and add a med before giving remicade up altogether.

It does seem even as late as last year I've seen posts from members that are from the UK that talk of their GI or the NHS stopping remicade if scopes after a set time show remission. ... I think this has more to do with their Healthcare system and how it's set up.

As I often tell my friends, for all the issues with the US healthcare system, I wouldn't trade it for the NHS and the garbage our UK-based posters describe. Canada is not much better...

Clash, I was looking for a great article that was posted to this site a couple of months ago. Authored by William Sandborn MD, who is at the cutting edge of IBD treatment at UCSD, it outlined the response and remission percentages for those on biologic treatments.

I'd seen those numbers before, but not outlined as clearly as in that article. And now I can't find it. Anyways, I don't remember the exact figure, but much larger number of patients will have a response to biologic therapy, but will not achieve full remission. And greater than 25% of patients will have no response to a medication.

It is probabilities like these that makes changing a medication where a response is seen but remission is not achieved such a difficult decision, despite the numerous benefits of actually achieving remission.

 

[Maya142]

There are so few meds approved for Crohn's that it seems silly to run through them quickly. By getting off a biologic and risking antibodies, you're essentially ruling out a medication for the future -- and Remicade is very effective and not the one you want to lose!

My daughter had great scopes on Remi -- not quite clean, but MUCH better (her colon looked "beautiful," mild inflammation in her small bowel) and we kept her on Remicade after that till it stopped working.

 

[DustyKat]

Agree with all of the above too, lenny.

My son was diagnosed at 17 and he too had severe and aggressive disease. The idea of medication is to keep the disease under control as there is no cure and that is the premise that we are working under. Monitor the disease regularly via bloods, faecal testing, scoping and objective markers and while all is going along fine…do not change a thing.

By the time you get past steroids and onto the maintenance medication I think it is a good idea to look at it exactly that way, maintenance. Just in the same way many other chronic, incurable diseases also use medication to maintain the status quo...a diabetic uses insulin to control their disease or an asthmatic uses a preventative puffer to keep their disease in check rather than relying on Ventolin. Maintenance and control hopefully lessens or eliminates the periods of chaos in which disease has the greatest potential to cause damage. With that in mind I too would be questioning the reasoning of the doctor in wanting to cease treatment.

 

[Justanothercp]

I've been on remicade for over a decade, if it's working stay on it.
I'd advise to seek a second opinion. Going off of it because it is working doesn't make sense, and frequently once off you can't go back on. I hope you can find a doctor you feel comfortable with.

 

[valleysangel92]

I agree with the all the above. When remicade was used in an episodic manner, early on, it was proven the chance of building antibodies to it were much higher. So, I wouldn't throw a med to the curb if a colonoscopy proves it's working, especially biologics since there is the potential to create antibodies.

Now, my son did have some response to remicade but not complete response that leads to remission. Still, we adjusted dose, schedule, added mtx (and tweaked mtx dose) over a period of time in an effort to not have to throw remicade to the curb. So even if there is still sign of inflammation I would tweak things and add a med before giving remicade up altogether.

It does seem even as late as last year I've seen posts from members that are from the UK that talk of their GI or the NHS stopping remicade if scopes after a set time show remission. But, even then I think their GIs can speak to further usage. I think this has more to do with their Healthcare system and how it's set up. I wish I could remember some of the members user names so I could tag them but it's been quite awhile. I think valleysangel92 may can speak to other though I don't think she has been through that process. Needless to say, all studies, so far, have shown stopping remicade creates a higher chance of antibodies and commonly leads to a flare of active disease.

I would get a second opinion.

Thanks for the tag Clash, you are correct, it is, unfortunately, still pretty common to take people off infliximab/remicade if they are in remission. The way it works is you go to the multi team meeting and they say if you can have it, if you can, usually you get reviewed every year to see if its working appropriately, if it's still worth the risks or if there is something that needs to be changed. It is becomming more common to allow patients to stay on it for as long as needed (until it becomes uneffective or they find something more suited to the patient) but some hospitals and trusts still insist on taking people off it to "see what happens". It is partly due to the way health boards grant the funding, and partly down to the individual hospital. I didn't get to the re-assessment stage, as I had an allergic reaction, but I was told that if they didn't think it was working after a year I would of been taken off, or if for some reason it had become too risky to stay on.

I'm now going through the approval process for a newer drug and the same rules apply with this too.

 

[ronroush7]

Thanks for the tag Clash, you are correct, it is, unfortunately, still pretty common to take people off infliximab/remicade if they are in remission. The way it works is you go to the multi team meeting and they say if you can have it, if you can, usually you get reviewed every year to see if its working appropriately, if it's still worth the risks or if there is something that needs to be changed. It is becomming more common to allow patients to stay on it for as long as needed (until it becomes uneffective or they find something more suited to the patient) but some hospitals and trusts still insist on taking people off it to "see what happens". It is partly due to the way health boards grant the funding, and partly down to the individual hospital. I didn't get to the re-assessment stage, as I had an allergic reaction, but I was told that if they didn't think it was working after a year I would of been taken off, or if for some reason it had become too risky to stay on.

I'm now going through the approval process for a newer drug and the same rules apply with this too.

Best to you with the new drug.

 

[Scipio]

Stopping treatment with biologics for patients in remission is not as crazy as it initially sounds for two main reasons: 1) to minimize side effects of the biologic therapy and 2) to cut healthcare costs incurred by these very expensive drugs. The key is to see whether this can be done without significantly increasing the risk of relapse of the Crohn's.

The first big trial where stopping Remicade was tried was the STORI study conducted by a French group, including some of the world's top IBD researchers:

http://www.ncbi.nlm.nih.gov/pubmed/21945953

In this study they showed that about half of patients in remission would relapse within one year of the Remicade was stopped, but some of the others were still in remission after two years post-stoppage. That high relapse rate was a disappointing result, but they also showed that it was possible to cut that number down to 10% if they risk-stratified the patients by age, sex, and other risk factors such as disease location, severity, CRP levels, etc. This and other studies also showed that patients who relapsed could be safely restarted on the biologic and still achieve re-remission in a high percentage of cases.

So while not ideal, the fact that some patients can maintain remission for years without the Remicade, and safely restart the Remicade if need be, has given rise to a lot of follow-up studies that have been published and others that are still ongoing. Developing firm guidelines about when, if ever, biologic therapy can be safely stopped remains a worthy goal.

With no firm guidelines in place, currently patients have to be considered for stoppage on a case by case basis. I have no first hand knowledge, but I suspect that's what the British review panels mentioned above are doing - looking at each individual patient in light of the best published research available and doing their best to determine whether stopping therapy is a good idea based on the odds of that particular patient remaining in remission.

This is a still-evolving area of great interest.

 

[my little penguin]

Slides on what happens if you stop therapy
http://online.ccfa.org/site/DocServer/Haper_-_Can_I_Stop_IBD_Therapy.pdf?docID=28681

Also keep in mind the studies scripo cited are based on adults
Kids dx with crohns have a much more severe natural history of crohns and typically are harder to treat
So chosing to stop a med that is working in someone who was dx was a child is not the same as chosing to stop a med in adult onset Ibd

If my child was to follow those guidelines for who should stop based solely on bio markers etc he would be miserable

He meets all the standards but thankfully the one time he had to withhold his humira
For a week or two all of his specialists saw what his system does without biologics and only Mtx .

He also had to stop remicade due to allergic reaction so purposely stopping a biologic just to see what happens does not make sense since only 30% get remission from biologics and the ones who maintain that remission drastically decreases every year .

I need to find the study but there was one calculating the cost of keeping a patient on biologics vs hospitalization - cost no matter the country is always the first factor

 

[my little penguin]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4837201/

Deciding on standards and the "cost of productivity " loss of work due to illness hospitalization etc...

Introduction

This chapter explores the published cost-effectiveness literature on the costs and benefits of TNF-α inhibitors. Within the UK, the licensed anti-TNF treatments are adalimumab and infliximab. The following section goes on to describe the results of a systematic literature review of these treatments for CD.

When assessing the economic impact of CD, costs can be divided into direct costs and indirect costs. Direct costs refer to the costs of an intervention itself and include the value of all resources consumed in the provision of an intervention, including all side effects occurring as a result of treatment, and all future health-care expenditures contingent on either the intervention or side effects. Direct costs include all goods, services and other resources used, both within and outside of the health-care sector. Health-care costs include all medication, diagnostic tests, supplies, staff and medical facility costs. Costs outside health care can include the costs to the patients and to other public agencies. Indirect costs include those resources consumed that are not directly paid for by any party. As the ability of patients to work is related to general health and the time spent in treatment, indirect costs include productivity gains and losses. Indirect costs also include the productivity costs of unpaid carers including family members.

In CD, the perspective taken may have a significant impact on the costs associated with the disease and the overall conclusions drawn from the evidence. Several perspectives can be adopted and the NICE reference case recommends concentrating only on the direct health-care and public social service (PSS) costs. A researcher may also wish to consider a societal perspective that includes direct and indirect costs to all parties as a sensitivity analysis in an economic evaluation.

From
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0048985/?report=classic

 

[lenny]

My son is kind of anti med and getting him to accept that he had to get on and stay on Remicade was a bit of a challenge and hearing a doctor say he could take him off isn't very helpful to us.

We were told by his pediatrician that he would have to stay on it and now here comes a doctor saying that he can stop after less than a year and a half.

I think we will be looking for a new doctor. Again.

Thanks for weighing in everyone!