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Crohn's Disease Forum » Treatment » Remicade/Infliximab » How do you deal with the risks of Remicade?


11-21-2014, 01:51 PM   #1
GeorgeMc
 
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How do you deal with the risks of Remicade?

My doctor wants to start me on Remicade from increased inflammation and fistulas. I'm very scared about getting cancer. How do you deal with risks?
11-21-2014, 02:57 PM   #2
DJW
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I just started Remicade in September.

The risks are very low. One of the members did a great job putting it in perspective with risks we face everyday but never think about. Unfortunately I don't remember who posted it.

Having felt with many crohns complications including toxic mega colon, abscesses, fistulas, blockages, bowel perferations, and nearly bleeding out Remicade is a no brained for me.

It's important to understand all the risks of not treating this disease properly (including an increased cancer risk).
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11-21-2014, 06:20 PM   #3
Lisa
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I look at the risks versus the benefits.....in my case, the benefits have given me back my life and I have not been hospitalized in over 8 years!
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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.
11-22-2014, 01:45 PM   #4
Jay Woodman
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@GeorgeMc...I think it's a very personal journey how one deals with your diagnosis & comes to understand & accept the Surgical or Pharmaceutical recommendations of your Specialist. For me I've moved along the spectrum & started Remicade on November 9th., 2014. It hasn't been an easy decision for me either & frankly I've been sitting on the fence since my first abscess & fistula development in 2012. I think psychologically that it's important you start your treatment in a positive frame of mind : ) Good Luck with your decisions.
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11-22-2014, 06:04 PM   #5
Clash
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I think it is important to be confident in your treatment choices. If you have concerns about remicade I would suggest writing them down and going over them with your GI. An important thing to remember is that you take risks every day for quality of life and convenience but there are no black labels to remind you of this. The risk of dying in a car wreck is higher than the risks associated with cancer and remicade, drowning carries a higher risk. We are given these pamphlets on the meds and our nature is to research the material but have you ever read the risks associated with taking Tylenol, scary as well.

I'm not saying the risk isn't real just that it is rare. There are known benefits to this med, you have to determine if these benefits are worth the risk and if you can feel emotionally and mentallyfeel confident in the decision. Crohn's can be insidious, silently causing irreparable damage. There are definitely risks involved with leaving Crohn's under treated or untreated.

I hope you are able to make a decision about treatment with confidence and no matter the choice I hope it leads you to long, lasting remission.
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11-23-2014, 09:32 AM   #6
nogutsnoglory
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The risks are scary but they are rare which is why the drug is approved and has been used in tens of thousands of people. It's a risk benefit analysis. The idea of untreated IBD for me which is not a risk but a reality is a lot scarier to me than a possible but small risk of another problem.
11-23-2014, 10:02 AM   #7
my little penguin
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Ds started remicade at age 8.
It only lasted 8 months before he had multiple allergic reactions to it on infusions 7 & 8.

That said the risk of tcell lymphoma is very rare

To look at the numbers helps me sleep

Risk of dying for kids under 14 in the US
By car 1 in 250
By drowning 1 in 1000
Any regular person on the street without Ibd or remicade tcell lymphoma 2 in 10000

Remicade or any biologic plus the use of any immunosuppressant at any time 6 in 10000.


So an increased risk but compared to other risks I allow my child to take every day to improve quailty of life it's very tiny .

Look up other risks hot showers , using a cell phone , clock radios by the bed

Sometimes it's better not to know IMO .
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11-23-2014, 10:48 AM   #8
DJW
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Thank you MLP.
11-26-2014, 10:38 AM   #9
SdN
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George I've been on Remicade for a couple of years now. At first I was kind of concerned with the risks of infection, cancer etc. but once I put everything into perspective I realized my overall risk for cancer probably went DOWN after taking Remicade. If your disease is uncontrolled your risk for cancer is already higher than normal. Getting it under control will help in many many ways. The medication is not the enemy the disease is, always keep that in mind.
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Diagnosed with Crohn's September 2009

50mg Imuran - Jun 2010
increased to 150mg Imuran - Jan 2011
5mg/kg Remicade every 8 weeks - Mar 2011
stopped Imuran - Aug 2011
7.5mg/kg Remicade every 8 weeks - Nov 2011
Remicade is still working - Nov 2014
Colonoscopy shows no Crohn's! - Dec 2014

Current meds - 7.5mg/kg Remicade
11-26-2014, 11:31 AM   #10
maggiesfour
 
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What is the quality of life?

In the facility where I got my transfusions, there was a woman there who has been getting them for 15 years! She was in the trials! She looks fabulous and gorgeous! Her daughter is a famous model, and she has had a full, wonderful life, and is looking forward! Any doubts I had during my first transfusion, she dispelled.
WE are all different, and we all react differently with the variety of drugs we are given. I, am now off remicade, as I have 100% antibodies to it.
We are all different. Now we see what is next. Just be comfortable, and if you are not, then you stop. Its that simple.
12-01-2014, 07:57 PM   #11
Valek
 
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GeorgeMc you just have to know the risk is very rare!!

My GI told me that all of patients taking remicade none got cancer.
12-01-2014, 09:56 PM   #12
dave13
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I also weigh the risk/benefit factor. I have been on it since July of this year,so it has been a fairly short time.
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12-01-2014, 10:26 PM   #13
CAM477
 
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Ive been on it for 6yrs now & my 14yr old son is being assessed for it now as we speak...
I guess u gotta weigh out ur options, quality of life now versus what may happen later on down the track.... especially if they talk surgery. ..
Im trying to just deal with each day as it comes instead of worrying about things that may not happen...
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