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Crohn's Disease Forum » Treatment » Remicade/Infliximab » My Doctor Advised Me to Stop Remicade.


03-08-2016, 02:43 AM   #1
DavidXU
 
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My Doctor Advised Me to Stop Remicade.

Hi everyone!

I have been on Remicade for more than one year, and received 10 infusions so far. I had one scope prior to the 4th infusion, and it seemed that my ulcers had 99% healed at that time. (though I always have symptoms like minor pain or diarrhea)

Yesterday, I talked with my doctor. She suggests to schedule another colonscope, and see how Remicade has been working. If the result is good, she thinks it is a good time to stop Remicade and turn to AZA.

Her reason is that, if I keep using Remicade given it has worked well, I will sooner or later develop antibody to it and lose efficacy. Once that happens, it will be a hard time for me. Alternatively, if I actively turn to AZA now, I will face a 50% chance of flare up within 1 year. Even when the relapse happens, I can still go back to Remicade, and it will work again for me.

I was wondering if there are anyone who share similar experience. How did your doctor give advice on it, and what did you choose? Thanks!

David
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-Misdiagnosis-I: UC, 2012
-Misdiagnosis-II: Intestine Tuberculosis, 2013
-Diagnosis: CD, 2014.
Medications:
1. 5-ASA (helped only a bit)
2. anti-TB medicines (once healed all ulcers but came back months later)
3. Predison (worked well but not as well as tapering off)
4. Remicade (10 infusions so far)
5. pray for a cure for us all
03-08-2016, 06:23 AM   #2
nitty
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Hi!

I haven't used Remicade yet, but have done a little research as it may be next on my list.

From what I can gather, if you are doing well on Remicade then you should stay on it as long as you can.

From the Remicade website:

"When you stop Remicade and then start again, your body may react by developing antibodies against Remicade. This makes it difficult to start therapy again without a decrease in effectiveness."

I'm sure there will be others on here with more experience than me who can advise you.
03-08-2016, 07:17 AM   #3
DavidXU
 
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Hi!

I haven't used Remicade yet, but have done a little research as it may be next on my list.

From what I can gather, if you are doing well on Remicade then you should stay on it as long as you can.

From the Remicade website:

"When you stop Remicade and then start again, your body may react by developing antibodies against Remicade. This makes it difficult to start therapy again without a decrease in effectiveness."

I'm sure there will be others on here with more experience than me who can advise you.
Yes, this is also my first thought about the choice. However, my doctor's concern is, as I stay on Remicade for a longer time, the antibody will also develop in my body. And when Remicade eventually loses its effectiveness on me, I have to turn to another biological medication. She thinks that it is not a good idea to have long term exposure to these biologics with strong side effects.
03-08-2016, 07:38 AM   #4
Lisa
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Stopping now will probably not increase your chances of being able to go back on Remicade if necessary - you may be doing more harm than good if you stop now when it is working well for you.

Are you having side effects from the Remicade? Personally I haven't had any issues that are of great concern or would make me stop getting my infusions - I've been on it for just over 10 years now and it is still working well for me. I'm VERY GLAD my doctor hasn't talked about stopping it as my condition before was only getting worse and worse.
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
03-08-2016, 08:28 AM   #5
ronroush7
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I agree with Lisa.
03-08-2016, 08:39 AM   #6
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I'm not sure where your doc is coming up with the fact that if you stay on the risk of antibodies increases. I don't think there has been a study to suggest this. But there are several studies that have consistently shown that stopping the remicade and then starting it again gives you a higher risk of developing antibodies. Due to this the prevailing theory is as long as remicade is effective you should stick with it.

Many people have been on remicade for a number of years in both the GI and Rheumatology aspects.

I'm going to tag my little penguin as she stays up to date with the latest studies and Scipio because the seem to have a good understanding of CD treatment regimens. Hopefully, one of them will be by.
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PAST MEDS: remicade, oral mtx, humira
03-08-2016, 09:21 AM   #7
lenny
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My 19 year old son is only on Remicade as his doctor said the medicine that is often used in combo with Remicade, is especially dangerous for young men as they are the most likely to develop some incurable cancer. Do you take the combination of drugs, or are you just on Remicade?
03-08-2016, 11:37 AM   #8
DavidXU
 
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My 19 year old son is only on Remicade as his doctor said the medicine that is often used in combo with Remicade, is especially dangerous for young men as they are the most likely to develop some incurable cancer. Do you take the combination of drugs, or are you just on Remicade?
I am just on Remicade. My doc is considering add AZA and then stop Remicade in 3 months.

btw, I have also heard about this kind of horrible cancer stories. Even though they are rare, I was still scared haha.
03-08-2016, 11:41 AM   #9
ronroush7
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I am just on Remicade. My doc is considering add AZA and then stop Remicade in 3 months.

btw, I have also heard about this kind of horrible cancer stories. Even though they are rare, I was still scared haha.
Are they going to substitute another biologic after the doctor stops the Remicade?

03-08-2016, 11:46 AM   #10
my little penguin
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Davidxu please be aware the T cell Lymphoma cancer is beyond rare
In the us when using the combo its 6 in 10000
aversge persons Without Ibd risk is 2 in 10000
Death by car or swimming is exponentially higher
(1 in 250 and 1 in 1000 respectively )
But these are acceptable risks by everyone everyday


Will look into more on what your doc is saying and post on that
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03-08-2016, 12:14 PM   #11
my little penguin
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Abstract

Background Anti-drug antibodies can be elicited by infliximab and adalimumab, but the rate of their decay after therapy is stopped is unknown.
Aim To investigate the decline of anti-drug antibody titre after anti-TNF cessation, and to evaluate the clinical utility of anti-drug antibody measurement before anti-TNF re-induction.
Methods Inflammatory bowel disease (IBD) patients who stopped anti-TNF therapy and had measurable anti-drug antibodies were prospectively followed up by serial blood measurements of antibodies levels. The clinical outcome of a second cohort of patients who received re-induction by infliximab or adalimumab after a drug holiday >4 months was determined vis--vis their anti-drug antibodies status before re-induction.
Results The first cohort included 22 patients with anti-drug antibodies who were prospectively followed up after cessation of anti-TNF. Sixteen had antibodies-to-infliximab (ATI) and six had antibodies-to-adalimumab (ATA). ATI titres declined within 12 months to below detection levels in 13/16 infliximab-treated patients, whereas ATA titres became undetectable in only 2/6 adalimumab-treated patients (P = 0.04). The second cohort comprised 27 patients who resumed anti-TNFs (24 infliximab, 3 adalimumab). Of these, 3/5 patients with measurable anti-drug antibodies before re-induction experienced severe hypersensitivity reaction and/or nonresponse mandating drug-discontinuation, compared to 11/22 patients who were re-induced without measurable anti-drug antibodies (OR = 1.5, 95% CI 0.211, P = 0.7).
Conclusions Antibodies to infliximab titres decline to undetectable levels within one year of cessation of infliximab in the majority of patients, whereas antibodies to adalimumab seem to persist longer after adalimumab discontinuation. Measuring antibodies to infliximab prior to infliximab re-induction is probably of little clinical utility, especially if more than a 12-month drug-holiday has elapsed.

From
http://www.medscape.com/viewarticle/759353


The Decline of Anti-drug Antibody Titres After Discontinuation of Anti-TNFs
IMPLICATIONS FOR PREDICTING RE-INDUCTION OUTCOME IN IBD
S. Ben-Horin; Y. Mazor; H. Yanai; Y. Ron; U. Kopylov; M. Yavzori; O. Picard; E. Fudim; Y. Maor; A. Lahat; D. Coscas; R. Eliakim; I. Dotan; Y. Chowers | Disclosures
03-08-2016, 12:16 PM   #12
DavidXU
 
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Davidxu please be aware the T cell Lymphoma cancer is beyond rare
In the us when using the combo its 6 in 10000
average persons Without Ibd risk is 2 in 10000
Death by car or swimming is exponentially higher
(1 in 250 and 1 in 1000 respectively )
But these are acceptable risks by everyone everyday


Will look into more on what your doc is saying and post on that
The incidence of Crohn's is about 0.2 in 10000 in East Asia, but I still got it... This fact makes me sometimes overreact to "rare" events since my diagnosis. Yes, you are right, we all have to accept some risks in order to live normally.
03-08-2016, 12:32 PM   #13
my little penguin
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http://online.ccfa.org/site/DocServe...df?docID=28681

Another presentation
Goes through all the different scenarios

Fwiw study or not
My kiddo had two allergic reactions to remicade after 8 infusions
He never developed the antibodies they tested for .
Our dermo told us that was the key
They can't test for every antibody and your body will produce antibodies just whether they show up or not on the test .

Tagging maya142 since her kiddo has stopped and started remicade a few times
03-08-2016, 02:41 PM   #14
Maya142
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My daughter did start and stop Remicade several times (she was on it 3 separate times). But we stopped it because it stopped being effective. Then we ran out of options, so we put her back on it. M was on Remicade by itself (very briefly), then Remicade + MTX, Remicade + Sulfasalazine, Remicade + Imuran and a bunch of other combinations.

She never had an allergic reaction, and I think that's because she was mostly on something with Remicade to prevent antibodies from forming. The third time she was on Remicade, we premedicated with Benadryl and Solumedrol. I was terrified she'd react, but everything was fine. It did not work well at all the third time, however, and that is pretty typical. She had antibody tests and they have always been negative but it still did not work.

I have never heard of stopping Remicade because it might stop being effective at some point in the future. Usually people stay on Remicade as long as they can (as long as it's effective or as long as they don't react to it).

Is it possible for you to get a second opinion? Even if hypothetically you were to stay on Remicade and at some point it stopped working, there are other biologics out there. Humira, Cimzia, Simponi (approved just for UC so far), Entyvio and Stelara (should be approved soon for Crohn's). By that time, there may even be more biologics.

I understand not all biologics are available in every place, but you still may have more options in a few years. We were going to move back to Delhi and were told they had Remicade there and would be getting Humira soon. That was years ago and I'm sure there are more drugs available now (but I haven't checked).

For what it's worth, I was terrified of the cancer risks too for my daughters. But at some point, you have to realize that they're very rare and we take risks every single day. And at some point, for us at least, the disease became scarier than the medications.

Good luck with whatever you choose.
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03-08-2016, 03:33 PM   #15
ronroush7
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I was on Remicade once and stopped because of the expense
After my resection my GI put me back on it. The second time, I had a lesion in my scalp as a reaction to the Remicade.

03-08-2016, 10:47 PM   #16
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Stopping now will probably not increase your chances of being able to go back on Remicade if necessary - you may be doing more harm than good if you stop now when it is working well for you.

Are you having side effects from the Remicade? Personally I haven't had any issues that are of great concern or would make me stop getting my infusions - I've been on it for just over 10 years now and it is still working well for me. I'm VERY GLAD my doctor hasn't talked about stopping it as my condition before was only getting worse and worse.
Hi Lisa, you are really lucky with Remicade. It is very impressive that this medicine has been working well for you for 10 years. I witnessed some less lucky cases in the hospital. Typically Remicade stopped working for these guys or cause severe allergies after the first several infusions.

I do not have major side effects from Remicade so far, except for that I cannot sleep well in the week following each infusion. However, I am still experiencing symptoms on daily basis, and have many restrictions in my foods. Are you feeling perfectly normal in the past 10 years, Lisa? Perhaps Remicade is not my miracle.

Money is another issue. I have spent $20k + on Remicade. But health is priority. If staying on it is medically optimal, I wont stop for financial reasons.
03-08-2016, 11:07 PM   #17
DavidXU
 
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From
http://www.medscape.com/viewarticle/759353


The Decline of Anti-drug Antibody Titres After Discontinuation of Anti-TNFs
IMPLICATIONS FOR PREDICTING RE-INDUCTION OUTCOME IN IBD
S. Ben-Horin; Y. Mazor; H. Yanai; Y. Ron; U. Kopylov; M. Yavzori; O. Picard; E. Fudim; Y. Maor; A. Lahat; D. Coscas; R. Eliakim; I. Dotan; Y. Chowers | Disclosures
Thanks for you info, my little penguin! According to this research, it seems to me that stopping Remicade and restart it later is a save choice.
03-08-2016, 11:15 PM   #18
DavidXU
 
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My daughter did start and stop Remicade several times (she was on it 3 separate times). But we stopped it because it stopped being effective. Then we ran out of options, so we put her back on it. M was on Remicade by itself (very briefly), then Remicade + MTX, Remicade + Sulfasalazine, Remicade + Imuran and a bunch of other combinations.

She never had an allergic reaction, and I think that's because she was mostly on something with Remicade to prevent antibodies from forming. The third time she was on Remicade, we premedicated with Benadryl and Solumedrol. I was terrified she'd react, but everything was fine. It did not work well at all the third time, however, and that is pretty typical. She had antibody tests and they have always been negative but it still did not work.

I have never heard of stopping Remicade because it might stop being effective at some point in the future. Usually people stay on Remicade as long as they can (as long as it's effective or as long as they don't react to it).

Is it possible for you to get a second opinion? Even if hypothetically you were to stay on Remicade and at some point it stopped working, there are other biologics out there. Humira, Cimzia, Simponi (approved just for UC so far), Entyvio and Stelara (should be approved soon for Crohn's). By that time, there may even be more biologics.

I understand not all biologics are available in every place, but you still may have more options in a few years. We were going to move back to Delhi and were told they had Remicade there and would be getting Humira soon. That was years ago and I'm sure there are more drugs available now (but I haven't checked).

For what it's worth, I was terrified of the cancer risks too for my daughters. But at some point, you have to realize that they're very rare and we take risks every single day. And at some point, for us at least, the disease became scarier than the medications.

Good luck with whatever you choose.
Hi Maya, I am sorry to hear that Remicade did not work very well for your daughter. My doctor's concern is somewhat related to her experience. If I stay on Remicade and got antibody in the future, I might run out of options, or have to try another biologics.

I will move to the US this summer and continue my graduate study/research there for a few years. Hopefully there will be more treatment options for me and medical insurance from my school will get them covered.
03-08-2016, 11:34 PM   #19
ronroush7
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Hi Lisa, you are really lucky with Remicade. It is very impressive that this medicine has been working well for you for 10 years. I witnessed some less lucky cases in the hospital. Typically Remicade stopped working for these guys or cause severe allergies after the first several infusions.

I do not have major side effects from Remicade so far, except for that I cannot sleep well in the week following each infusion. However, I am still experiencing symptoms on daily basis, and have many restrictions in my foods. Are you feeling perfectly normal in the past 10 years, Lisa? Perhaps Remicade is not my miracle.

Money is another issue. I have spent $20k + on Remicade. But health is priority. If staying on it is medically optimal, I wont stop for financial reasons.
If you are experiencing symptoms from the Crohn's it makes me wonder if the Remicade is still effective.

03-09-2016, 12:09 AM   #20
DavidXU
 
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If you are experiencing symptoms from the Crohn's it makes me wonder if the Remicade is still effective.
Me too. But the result of colonscopy before my 4th infusion was quite good. I was also experiencing symptoms at that time. The doctor says that I should not have noticeable symptom given the scope results. She considers that my symptom might be from IBS, and prescribed some probiotics for me.
03-09-2016, 12:33 AM   #21
ronroush7
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If your symptoms persist, I might ask the doctor to retest you. Last year. I had an enterography and it showed I was in remission. They told me that I had IBS and gave me medicine for when I had pain. I was still having symptoms so I had them do the test again and it showed active disease. But everyone is different.
03-09-2016, 12:44 AM   #22
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If your symptoms persist, I might ask the doctor to retest you. Last year. I had an enterography and it showed I was in remission. They told me that I had IBS and gave me medicine for when I had pain. I was still having symptoms so I had them do the test again and it showed active disease. But everyone is different.
I think CT enterography is usually less accurate than a colonscope, which allows the doctor to "see" the inside of our guts and check the inflamed areas carefully.

I will have a new colonscopy soon, perhaps in 2 weeks. Wish everything is fine.
03-09-2016, 12:46 AM   #23
ronroush7
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I hope everything is fine

03-09-2016, 09:46 AM   #24
my little penguin
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Entography just looks at different areas
So if your disease is active where a scope can see great
But more disease area can remain hidden from a scope and an entrography is the only way to see the damage when combined with a pill cam
03-10-2016, 08:10 AM   #25
DavidXU
 
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http://online.ccfa.org/site/DocServe...df?docID=28681

Another presentation
Goes through all the different scenarios

Fwiw study or not
My kiddo had two allergic reactions to remicade after 8 infusions
He never developed the antibodies they tested for .
Our dermo told us that was the key
They can't test for every antibody and your body will produce antibodies just whether they show up or not on the test .

Tagging maya142 since her kiddo has stopped and started remicade a few times
I could not open the first research, but I read the second carefully. My case is more similar to Scenario 2. The results look controversial: one study says "Nearly everyone who relapsed successfully re-started Remicade", while the other states only 50% of re-starters achieved remission again. This is interesting.
03-10-2016, 08:48 AM   #26
my little penguin
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The issue
When you stop a biologic even if you don't have a reaction when you restart the medicine
The odds are highly likely that the medicine will not be as effective the second time around
Since your body tends to fight against it more .
That is why taking a break from biologics is never recommended unless absolutely necessary .
03-10-2016, 05:07 PM   #27
Maya142
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That was the issue with my daughter - she did not have a reaction but Remicade simply did not work as well the last time she was on it. And she was put on a very high dose - 20mg/kg every 4 weeks (called "high dose Remicade"). Still did nothing and we had to move on to something else.
03-10-2016, 05:32 PM   #28
Salad_Shooter
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I've never heard of what your doctor is talking about. Never heard of stopping it while it's working for you. Personally, I'd never stop a medication while it's working...I'd wait until if and when it did lose efficacy. Stopping it now seems ludicrous to me. It's more likely you'd develop antibodies by stopping and restarting. I just don't understand her line of thinking at all.
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03-10-2016, 06:35 PM   #29
ronroush7
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I've never heard of what your doctor is talking about. Never heard of stopping it while it's working for you. Personally, I'd never stop a medication while it's working...I'd wait until if and when it did lose efficacy. Stopping it now seems ludicrous to me. It's more likely you'd develop antibodies by stopping and restarting. I just don't understand her line of thinking at all.
I agree

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