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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Can remicade be a lifetime treatment option?


11-18-2012, 10:38 PM   #1
Prince
 
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Can remicade be a lifetime treatment option?

Hi everyone,
I have crohns with a perianal fistula. I was dx april and have been on pentasa, cipro, metro to close the fistula which has not worked. I currently have no symptoms and the fistula seems ok for now. my doc wants me on remicade but im not sure if its worth it just for closing a fistula that does not bother me. Has anyone been on remicade for a long time with no side effects? can it be a longterm treatment option? can we get off of it once the fistula closes?

Thanks all!
11-21-2012, 03:26 PM   #2
LonghornGirl
 
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I am not sure about longterm treatment, and I am curious to see what the average span of remicade treatment is for folks on this board.

I'm just now beginning my treatments and have only the beginnings of fistula formations but not having any of the bad symptoms or any pain, so it's hard for me to willingly commit to something like this when I don't even feel like there's anything wrong most of the time. However, my doc explained how fistula behaves and over time how much wreckage it can cause if left untreated, so now I am basically giving in and assuming this treatment (even if it takes months/years) will better benefit me long-term than not doing anything about it and ending up with a bigger problem where surgery is a requirement.

Just my $.02. This is all new to me and I didn't even know what Remicade was until a week ago when my doc said that should be our next treatment plan.
11-21-2012, 04:17 PM   #3
Lisa
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I've been on Remicade since the fall of 2005....with little blips here and there, but overall have been healthier than my daughter and husband!
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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.
11-21-2012, 05:05 PM   #4
Clash
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Like pasobuff, there are members on here that have been on Remicade for long periods of time and do really well.

There are a few reasons that your GI may suggest Remicade. With younger people and newly diagnosed people some GI's have started to lean toward the "top down approach", which means using the big guns like Remicade to get the patient into remission quickly and halt the disease process before it gets to a more severe state such as stricturing or fistulizing. Using this approach, you could have a discussion with your GI about moving down the medicinal pyramid to a "lower drug" after achieving remission. Another reason for utilizing Remicade would be that you already have fistulizing disease and in that case Remicade has proven efficacy in clearing up some types of fistulas.

Here's the thing, if you utilize Remicade and then at some point come off of Remicade then percentages are much lower that you will be able to utilize Remicade with any degree of efficacy, because your body will build up antibodies to the drug among other reasons. When Remicade was first utilized for CD they used it episodically(when the patient was having a flare) and found that it lost effectiveness with this style of use and the patient would lose response to the drug, that is why they now utilize it consistently every 8 weeks.(Or whatever time span protocol is most effective for the individual)

I hope with whatever treatment regimen you choose you are able to achieve remission quickly!
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-21-2012, 05:58 PM   #5
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I too will be going on Remicade and no symptoms at this time, but with the scope in July 2012 they saw a narrowing and that's why. I don't want to have a resection again if I can help it. Hope the Remicade works!!!!
11-22-2012, 12:59 AM   #6
j.bug
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Thanks for all the info clash!!! I am just about to have my fourth infusion. I was actually scheduled for #4 yesterday, but had to poatpone due to an emergency surgery.
I have talked with someone on the forum that has had over 60 infusions and is still getting positive results from it! Some people never get the desired results and need to try something else.

I don't have.any fistulas with my CD, but I have many lesions. I also have esophageal crohns with ulcers lining my esophagus. It has taken me quite a long time to get so bad, going undiagnosed for many years. I was started on pred and pentasa, when my CD didn't respond, I was put on remicade as well. I am healing very slowly, but healing none the less!!!
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DX CD Terminal Ileum May 2012
DX Esophageal CD May 2012


Meds

*Pentasa *Hyoscyomine *Protonix *Gabapentin *Xanax *Wellbutrin *Ultram *Flexeril
*Vitamin D3 *B-12 injections *Iron *Remicade
*Weekly IV Fluids W/Banana Bag


Today I will fight again!!! I will not let this disease own me, or define me!!!!


11-22-2012, 10:10 PM   #7
Clash
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That's awesome that you are seeing some results from your infusion. My son saw results immediately with loading doses but hasn't been able to stretch out past about 4 weeks so we added Methotrexate He seems to be working his way to remission now. A lot of patients do get long periods of efficacy from Remicade. C's(my son) ped. GI has several patients that have been on remicade alone since it showed efficacy in studies with IBD and they are still going strong. Most of them, of course have moved on to an adult GI but C's GI keeps up with their progress still. We are hoping to pull C off the MTX at some point and stretch C's infusions back out from 6 weeks. It seems to be all about tweaking and monitoring to find just the right regimen to get you into remission.

I hope that remicade is the great treatment that it has been for C. Even though he hasn't reached full remission yet it has alleviated the majority of his symptoms and definitely the pain he was experiencing! Good luck with your infusions j.bug, I hope it gets you into remission quickly!
11-23-2012, 01:15 AM   #8
j.bug
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So clash, the Methotrexate was added on top of the remi? I have heard of this methotrexate a lot on the forum, but I have heard nothing of it from my drs. I just wonder if it isnt something i should try to help aid in the process.
11-23-2012, 10:35 AM   #9
Clash
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J.bug, generally methotrexate is added when your body is developing antibodies to the Remicade. Methotrexate(MTX) is an immunosuppressant like Imuran or 6MP(although it is not a thioprine as they are). So your GI may test you for antibodies at some point if you aren't responding to Remicade and if the test comes back he may opt to offer you MTX, 6MP or Imuran.

MTX is usually given as pills, once a week(my son takes 10 pills every Friday) or a weekly injection. MTX, of course, has a list of nasty side effects, and generally you take a daily foilic acid vitamin as well(since MTX is an anti folic antagonist).

Something you could try which could help Remicade along would be EN(Enteral Nutrition). Anyway it is a liquid diet of formulas, ex. would be boost or ensure, that you would drink for six weeks( or take through a nasogastric tube). Enteral Nutrition has the same efficacy rates as steroids at inducing remission. Crohnsinct, another parent on the forum, opted for EN for her daughter when MTX was proposed to help the Remicade along, and her daughter did fabulously. Of course, EN cannot prevent Remicade antibodies.

Lastly, you can find alot of info on MTX in the treatment forum. It was another of those hard decisions we've made but I feel like it is making a difference for my son, C. He has some upcoming labwork that will help tell the tale!!
11-23-2012, 01:27 PM   #10
Prince
 
Join Date: Nov 2012
Location: Boston, Massachusetts
I am not sure about longterm treatment, and I am curious to see what the average span of remicade treatment is for folks on this board.

I'm just now beginning my treatments and have only the beginnings of fistula formations but not having any of the bad symptoms or any pain, so it's hard for me to willingly commit to something like this when I don't even feel like there's anything wrong most of the time. However, my doc explained how fistula behaves and over time how much wreckage it can cause if left untreated, so now I am basically giving in and assuming this treatment (even if it takes months/years) will better benefit me long-term than not doing anything about it and ending up with a bigger problem where surgery is a requirement.

Just my $.02. This is all new to me and I didn't even know what Remicade was until a week ago when my doc said that should be our next treatment plan.


Thanks for sharing ur info and experience. I met my doc and he said the fact that i have no symptoms and have stable weight for months hopefully means things are under control and since i am undergoing a bottom up treatment i dont need to go under remicade for now if im not ready (which i am clearly not ) so im ganna have a colonoscopy to see if things are better, worse or the same. only if things are worse i would go under remicade.
So can u tell me more about the wreckage of a fistula and how they behave? my doc said we can not say anything about how its ganna be as they are different. it can simply stay the same and even close, or get worse. mine is a perianal which opens out to the skin. Cheers!

(***Enjoy the moment with the ones you love, dont destroy its beauty and joy by thinking about what has not happened!)
11-26-2012, 09:29 AM   #11
LonghornGirl
 
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Thanks for sharing ur info and experience. I met my doc and he said the fact that i have no symptoms and have stable weight for months hopefully means things are under control and since i am undergoing a bottom up treatment i dont need to go under remicade for now if im not ready (which i am clearly not ) so im ganna have a colonoscopy to see if things are better, worse or the same. only if things are worse i would go under remicade.
So can u tell me more about the wreckage of a fistula and how they behave? my doc said we can not say anything about how its ganna be as they are different. it can simply stay the same and even close, or get worse. mine is a perianal which opens out to the skin. Cheers!

(***Enjoy the moment with the ones you love, dont destroy its beauty and joy by thinking about what has not happened!)
Well it may be true that it's hard to predict for certain how the fistula will evolve or if it will go away on it's own, and it may depend on where they are located. I'm not rally sure about perianal but mine are forming in the tissue lining of my intestines and are at-risk of branching off and creating communication tubes to other organs (like the bladder, other parts of the intestines, or the stomach). Basically, instead of just being a pitted ulcer, if the fustula breaks thru the weakened and inflamed tissue, it develops tubes that will continue to grow until it reaches another part of the body and start connecting to that. At least, that's how it was explained to me based on what my last scope indicated. The Remicade is a way to help smooth out the tissue and keep it from doing any further damage, preventing a surgical requirement.

Basically, I was diagnosed with Crohn's after having been infected with C-Dif. I fought off the bacterial virus with two rounds of antibiotics, and the Crohn's-like symptoms declined and I gained weight again, and don't feel any pain whatsoever. However my bloodwork and latest scope show that I'm still experiencing the chronic inflammation, and the more recent scope showed the fistula but they were not there in my previous scope. Because of how rapidly they have formed, my Doc seems to think they will keep getting bigger based on the fact my intestines are still weakened and inflamed.

I am taking a CT Enterography next week before actually starting Remicade to see if the fistula have started appearing on the outside of the intestines yet, as we have only seen it from the inside so far.



Trust me, since I am not really affected by any pain, weight loss, or emergency bathroom trips anymore, it's easy for part of me to walk away and say "screw it, I'll be fine and take my chances." While that is SO very tempting (to avoid potential pain and high cost of this treatment), I realize that just because I don't "feel sick" doesn't mean that all is well and I've just been taking into consideration everything my doctor keeps recommending. Basically, I'm going to take her suggestions as a preventative measure in hopes that my current condition doesn't get any worse or require surgery down the line.

Luckily, the two people I personally know who have had to to Remicade in the past have had very good experiences and one girl even feels healthier than ever before (she rarely gets a cold/flu sickness). So I'm hopeful that this process may help me see the light at the end of the tunnel for my treatment, but it does make me hesitant at the thought this might have to be an ongoing lifelong process.
11-28-2012, 12:51 PM   #12
j.bug
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Something you could try which could help Remicade along would be EN(Enteral Nutrition). Anyway it is a liquid diet of formulas, ex. would be boost or ensure, that you would drink for six weeks( or take through a nasogastric tube). Enteral Nutrition has the same efficacy rates as steroids at inducing remission.
Lastly, you can find alot of info on MTX in the treatment forum. It was another of those hard decisions we've made but I feel like it is making a difference for my son, C. He has some upcoming labwork that will help tell the tale!!
I am starting juicing very soon. I have read so much about its positive benefits. I was stuck on nothing but boost for a long time. With my esophageal crohns, I have ulcers that line my throat and esophagus. Its hard to eat when it feels like you're swallowing razor blades!

When my symptoms started to improve, I started eating again...but like I said, I am going back to EN.

I truly hope your sons labs come back with positive results! And thank you so much for the info, and your support!!

SMILE AND HUGS!!!!
11-28-2012, 02:10 PM   #13
Clash
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j.bug, good for you on the juicing, I hope you great benefits from it!!! Thanks for your support as well! Maybe with Remi and EN you can find your way to remission quickly, I truly hope so!
11-29-2012, 02:40 AM   #14
Lowbudge
 
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I was told by my GI that I would stay on Remicade for ever till a new drug came along or I could non longer take it. He also stated that once I became symptom free for 2 years he would give me 6 month med breaks then put me back on. So as it is now I see long term care on this drug..... Cross fingers I can step down from it and maintain with something else or with diet.
12-02-2012, 06:09 PM   #15
Clash
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Lowbudge, welcome to the forum!

How long have you been utilizing Remicade? Have you reached remission yet? My son is also on Remicade but we just started earlier this year. Are you experiencing any symptoms yet?

If you would like to post your experience with CD have a look at our Your Story we would love to hear your story and experiences.

If you are interested in looking through our diet forum and seeing other members' experiencies with a variety of diets you can click here
01-05-2013, 02:40 AM   #16
amyh
 
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I met one guy in the infusion center on remicade for 8 years! And he was eating Jack in the Box!
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01-07-2013, 04:40 PM   #17
Rustlergirl
 
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Have had CD for 40 years. Three resections. Have fistulas. Gone thru most of the drug offerings. Have been in remission on and off over the years. But in the last 2 years or so, have been having frequent partial bowel obstructions, that have turned themselves around or responded to medical treatment in hospital. It is awful worrying if the obstruction will become complete and require another resection. I am lucky in that I have not had any ostomies. Last year, my GI doc started me on Remicade. It was a big and scary decision for me, but after talking to my doc and family and friends, the consensus was to go for it. I am soooo happy that I did. No partial obstructions or hospital visits since I have been on it. I am still concerned about decreased immune function and have had two unusual infections (for me) - responded well to treatment. But remicade is my friend. Good luck to all of you who are trying it. PS I am on medicare and have a supplemental insurance. If you get the treatment in an out-patient facility, medicare will pay. But not if you have it at home. There are some alternatives to remicade that involve giving yourself shots at home (like with insulin) but then medicare will not pay for it. I don't know if other insurances are the same...but I almost couldn't take the treatment, but my GI docs office helped me out with the insurance. Something to keep in mind. Especially for us seniors.
01-08-2013, 09:53 AM   #18
TrulyBlessed
 
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i dont know about lifetime.. i am 22 yrs old and have been on remicade every 4-6 weeks for the last 13 years which according to my GI was above average and i have severe crohns with no remission in at all. my infusions were just deemed inneffective and as my GI says everybodys body at some point down the road will begin to reject this medicine. NOt sure if i helped and of course this is just in my case and according to my doctors
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