• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Afraid to go on Remicade

Hello Everyone. I'm a 40 year old female who was diagnosed with Crohn's Colitis 3 years ago (I know I was "old" when I was diagnosed). From age 20 to 40 however, I suffered on and off not knowing what was wrong and being misdiagnosed several times. Finally, in the summer of 08 when I turned 40 I had a very bad flare (severe intestinal pain, constipation/diarrhea, swollen painful ankles, headaches, fatique, fissure, rectal bleeding). My GI did a colonoscopy and discovered multiple ulcers scattered throughout my colon and large intestine as well as an extremely inflammed illeocecal valve. I had a small bowel series done, and the results showed no crohn's in the small intestine. I was put on Lialda and 6MP, which I took for a year. After a year, the meds were no longer helping anymore. At that point he told me to consider Remicade. I told him flat out "no" and I took myself off all medications. I did alright for almost 2 years and of course, I had flares inbetween that time, mostly between the months of November to March. This past March I wasn't feeling well and I had another colonoscopy done. The results were; ulceration, thickening, granularity and friability in the cecum, illocecal valve, distal transverse colon and splenic flexure (whatever that is). I buried my head in the sand and hoped the pain would just go away...but it didn't. In June I started flaring really badly and it hasn't stopped since then (in fact it just keeps getting worse. Now I have severe nausea too). I went to the doctor last week and he told me that I need to go on Remicade...period. I am so terrified to go on Remicade. I'm not a "medication" type person and I truly fear being on such a strong medication for the rest of my life. Are there any other viable options that I should discuss with my GI before jumping to Remicade? If you could share you experience or thoughts with me about Remicade I would GREATLY appeciate it!
Thank you in advance for your advice.
 
There's the possibility of managing your Crohn's with diet and the occasional steroid, but it's a very slim possibility. We tried it with our daughter.

You're right to be nervous about Remicade. It's heavy duty stuff and if you react badly to it, the consequences can be severe. It works for many, many people though.

What about Humira? It's usually tried AFTER Remicade, not before, but the chances of allergic reaction are less with Humira.
 
I am so terrified to go on Remicade. I'm not a "medication" type person and I truly fear being on such a strong medication for the rest of my life. Are there any other viable options that I should discuss with my GI before jumping to Remicade? If you could share you experience or thoughts with me about Remicade I would GREATLY appeciate it!
Thank you in advance for your advice.
Nobody is a "medication" type of person. Think of type 1 diabetics. They have to take insulin every day or they will face severe consequences. You are no different. You didn't choose this disease, but you have it, and you can't keep not treating it.

Remicade may not be the answer for you, but your doctor does weigh the risks and benefits before he prescribes it. He would not prescribe such a serious drug if he did not know you need it.

I hope you find a treatment that works for you and you find some peace of mind in treating it. But you have to realize that while there's an extremely small chance of something bad happening because of the Remicade, there's an almost 100% chance something bad will happen with your (untreated) Crohn's. Good luck!

Keep in mind if you start Remicade you don't have to be on it "for the rest of your life." You can stop it at any time you are uncomfortable with continuing it. It would not be advised of course, but you always have the option.
 
You should read through some of the threads here in the Remicade Club section. There are a lot of testimonials - from many who have had success and some who haven't. I would say the vast majority of us who are on Remicade were afraid to go on it.
 
Thank you so much for your responses!

First, I just want to clarify myself when I said that I'm not a "medication" type person. Yes, I understand and agree that most people wouldn't be on medication if they didn't seriously need it. I guess what I should have said is that I don't want to be put on such a strong medication without considering other options first. I mentioned Low dose Naltrexone to my doc but he's never heard of it. I was somewhat surprised that he hadn't heard of it. I don't know if I should seek a 2nd opinion before going starting Remicade or if that would confuse the situation even more. I've always liked my GI doctor a lot. When I asked the nurse how long I would be on Remicade she told me forever. That was why I went into a panic.
 
Thank you so much for your responses!

First, I just want to clarify myself when I said that I'm not a "medication" type person. Yes, I understand and agree that most people wouldn't be on medication if they didn't seriously need it. I guess what I should have said is that I don't want to be put on such a strong medication without considering other options first. I mentioned Low dose Naltrexone to my doc but he's never heard of it. I was somewhat surprised that he hadn't heard of it. I don't know if I should seek a 2nd opinion before going starting Remicade or if that would confuse the situation even more. I've always liked my GI doctor a lot. When I asked the nurse how long I would be on Remicade she told me forever. That was why I went into a panic.
Haha, what a helpful nurse! I am definitely an advocate of exploring all your options. I think second opinions are always a good idea, GI docs are not infallible and won't know everything. I just want you to be prepared for the idea that Remicade (or another biologic) might actually be your best option. It sounds like your disease is pretty bad right now and you need to get treatment.

Are you on anything at all right now? At the very least they should give you something for your acute flare (e.g., a steroid).
 
I've always liked my GI doctor a lot.
I'm sure this is not your situation but I want to state for the record that "liking" your GI doctor doesn't mean he or she will be the best at treating you. I stuck with a crap GI for a couple of years because his bedside manner was outstanding. Now I've moved on to a better GI who knows more about the disease and is better able to treat me (and his bedside manner is just as good). Don't be afraid to fire your GI even if you really like them and don't want to hurt their feelings. Also seeing a different GI for a second opinion doesn't have to mean you're firing your GI. It just means you are hearing another perspective. You can go from there.

/soapbox
 
I started Remicade shortly after diagnosis while in the hospital with an obstruction and fistula last month. I'm 53 (really old for this diagnosis) but had diarrhea for 30 years.

I've had no symptoms at all with the Remicade and I don't premedicate since Benadryl makes me hyper and shaky. I also have a high pain threshold (probably why it took so long for diagnosis) and am not a worrier when it comes to health issues.

My doctor thinks I will eventually get off Remicade - perhaps as soon as a year. I also am on the Specific Carbohydrate Diet and stick to it religiously.

A followup CT scan 10 days after my first Remicade dose, my fistula was healed and inflammation in my small intestine was gone. Still showed signs of the stricture, but greatly improved.

Lymphoma is the big scary side effect but only appears in patients on Remicade and other drugs whose names I cannot remember. I don't worry about it since I have never taken any other drugs for Crohn's except the Remicade.
 
There's the possibility of managing your Crohn's with diet and the occasional steroid, but it's a very slim possibility. We tried it with our daughter.

You're right to be nervous about Remicade. It's heavy duty stuff and if you react badly to it, the consequences can be severe. It works for many, many people though.

What about Humira? It's usually tried AFTER Remicade, not before, but the chances of allergic reaction are less with Humira.
I am in the running for Humira and am very hesitant as it is a lifelong commitment...if it works. My surgeon doesnt seem to think it will help my case but you never know until you try (that's what everyone keeps telling me). I hope you hear from people who have already tried Remicade. I have had 2 bowel re-sections and have learned to live with diarrhea for the past 28 years. I'm sure you've done your research on-line!
 
scl-it's when Remicade is combined with azathioprine. (Imuran?)

art nJ - All drugs have to post a long long list of possible side effects. There are many many side effects to steroids too. I was scared to put my son on a biologic med and I resisted and resisted it, but it has seemed to 'cure' his crohns. And I mean within weeks he was a different kid. All our family, friends, and teachers noticed the difference in his life. He's finally thriving and feeling like he's "a normal kid now" (His words). We are always hoping scientists are getting closer to a cure...Maybe these biologics are just that...Scientific break throughs.
 
All drugs have to give a comprehensive list of potential side effects, but if we're being fair and honest the biologicals have a more severe list than most. You have to do what you have to do and take what you have to take to treat your illness because not treating is not realistic, but nobody should sugarcoat the risk involved in any particular medication. It's present. Often, though, the risk of NOT treating is the greater one.
 
I started Remicade shortly after diagnosis while in the hospital with an obstruction and fistula last month. I'm 53 (really old for this diagnosis) but had diarrhea for 30 years.

I've had no symptoms at all with the Remicade and I don't premedicate since Benadryl makes me hyper and shaky. I also have a high pain threshold (probably why it took so long for diagnosis) and am not a worrier when it comes to health issues.

My doctor thinks I will eventually get off Remicade - perhaps as soon as a year. I also am on the Specific Carbohydrate Diet and stick to it religiously.

A followup CT scan 10 days after my first Remicade dose, my fistula was healed and inflammation in my small intestine was gone. Still showed signs of the stricture, but greatly improved.

Lymphoma is the big scary side effect but only appears in patients on Remicade and other drugs whose names I cannot remember. I don't worry about it since I have never taken any other drugs for Crohn's except the Remicade.
Scl - Remicade by itself increases the risk of lymphoma. From a CCFA presentation I watched - the normal population has a 2 in 10,000 risk. If I recall correctly using TNF-blocker (Remicade) increases that risk to 6 to 8 in 10,000. So the risk is real for anybody taking this drug - although still small.

Here is a section from the medication guide talking about cancer.

http://www.remicade.com/remicade/assets/med_guide.pdf
------------------------------------------------------------------
2. Risk of Cancer
-There have been cases of unusual cancers in children and teenage patients using TNFblocking agents.

-For children and adults taking TNF-blocker medicines, including REMICADE, the chances of getting lymphoma or other cancers may increase.
People who have been treated for rheumatoid arthritis, Crohn's disease, ankylosing spondylitis, psoriatic arthritis and plaque psoriasis for a long time may be more likely to develop lymphoma. This is especially true for people with very active disease.

-Some patients with Crohn’s disease or ulcerative colitis who have received REMICADE have developed a rare type of cancer called Hepatosplenic T-cell Lymphoma. Most of these patients were teenage or young adult males. This type of cancer results in death. All of these patients had also received drugs known as azathioprine or 6-mercaptopurine together with REMICADE.

-Patients with COPD (a specific type of lung disease) may have an increased risk for getting cancer while being treated with REMICADE.

-Tell your doctor if you have ever had any type of cancer. Discuss with your doctor any need to adjust medicines you may be taking.
--------------------------------------------------------------

The use of Remicade with Aza/6-mp is related to the rare form Hepatosplenic T-cell Lymphoma that is really nasty.

There is even more detail about what was found in clinical trials on page 9 of 54 in the following document.

http://www.remicade.com/remicade/assets/hcp_ppi.pdf
 
Last edited:
Well, I had a 2nd opinion with a most FABULOUS GI doctor. A few days before the this appointment I developed an abscess in the perineium area. I never had an abscess before so I didn't even know if it was that or just my imagination.

I learned A LOT from this doctor giving me the 2nd opinion but yes, I have my first perianal abscess (hooray) and she suggests that I get started on Remicade right now. She looked over 60 pages of paperwork and was very excited about my Crohn's (in a bizaare way) because she said most of the patients that she sees have pockets of Crohn's in their terminal Illeum. According to her I have it scattered throughout my entire intestine (not just large intestine like I originally thought). I also have it in the duodenum and a stool culture that was done back in February shows an issue with my pancreas. She said that there's a pancreas/crohn's-in-duodenum connection that is rare and highly controversial amongst doctors researching Crohn's. According to her, my case is one of the rare cases that would prove this connection really does exist. I've been researching it online and it's interesting I guess. I don't know...I just want to feel better.

I have my first Remicade treatment on Thursday. This doctor (along with my regular GI doctor) both think Remicade is going to do wonders for me...especially with my new friend the abscess.
 
art_nj: Sounds Like you have a plan. Good luck. Be careful of reading 'scary posts' on this forum. Go with what your doctor advises.

Paul's Pain: GOOD GRIEF!! Sun causes cancer too. I had a grandma die of that. I have a brother in law fighting cancer and isn't on ANY medications. And um, untreated crohn's causes colon cancer all by itself. How about breast cancer...why do sooo many women get that? Lots of stuff causes cancer.

Look at some of Ziggy's posts. (He's the stem cell journey guy), he was on Remicade for over 10 years when he was a kid. He's never had cancer. There are cases of patients using TNF drugs who got cancer...there are also A LOT of patients who haven't got it. There are millions of people receiving Remicade and Humira.
 
art_nj: Sounds Like you have a plan. Good luck. Be careful of reading 'scary posts' on this forum. Go with what your doctor advises.

Paul's Pain: GOOD GRIEF!! Sun causes cancer too. I had a grandma die of that. I have a brother in law fighting cancer and isn't on ANY medications. And um, untreated crohn's causes colon cancer all by itself. How about breast cancer...why do sooo many women get that? Lots of stuff causes cancer.

Look at some of Ziggy's posts. (He's the stem cell journey guy), he was on Remicade for over 10 years when he was a kid. He's never had cancer. There are cases of patients using TNF drugs who got cancer...there are also A LOT of patients who haven't got it. There are millions of people receiving Remicade and Humira.
Sorry if I came across negative. I just wanted to state that there is a increased risk with Remicade by itself. I have seen it mentioned in several threads that is is only related to taking other meds which is untrue.

I am taking both Remicade and Azathioprine. So it isn't like I am trying to scare people...... But it is a real KNOWN risk that needs to be weighed with your doctor.
 
I guess I'm at a point where I have to do something about the Crohn's regardless of cancer scares or not. I have read about the possibilty of Remicade causing cancer but like Brian's mom says, NOT doing something is not an option for me anymore.
 
Hi Art-

I am pretty much in the same boat with my peri-anal issues. Not a lot of options to treat peri-anal disease. Tried Azathioprine first. Now I added Remicade. So I put my trust in my doctor's opinion that Remicade is worth the risks.

I think it has started to help me a little - having less drainage. I have had two loading doses so far.

I wish you the best of luck with your treatment. In reading/researching Remicade sounds like a miracle drug for a lot of people.
 
Last edited:
PaulsPain,
Sorry if it sounded like I came down on you hard...I just hate this crohn's thing, and boy oh boy...I'd trade places with my 11 year old son in a heart beat if I could. Giving my son (who TOTALLY trusts his mommy) crohn's drugs is hard. In the beginning of my son's diagnosis and bad flare (lasted a year) I resisted too. My son just got sicker and sicker. I had to get to a place where I stopped reading all the literature and put my trust in our GI doctor. (I went thru a few doctors and have found one that I really have faith in). So when I read your post where you just quoted the 'risks' it reminded me of the time I was resisting help for my son all because I was scared. Its true that millions take these biologics and there are not millions coming down with cancer.

I'm praying and praying for a cure. Right now, for some people, Remicade and Humira are their only option to healthy insides.
Stay strong :) and Positive :)
 
@ Brian's Mom...I can totally relate to you on another level. My daughter has not been diagnosed with Crohn's, but she is Autistic. As a mom, we become so protective of our kids and always wish that we could take whatever they're dealing with away from them and do it ourselves. It is very difficult and scary to make life decisions for your child when you can never be 100% sure of the outcome. Sometimes the only thing we can do is find the best doctor for our child and put the trust in their hands. But it's NEVER an easy thing to do. 2 of my sons friends (ages 15 & 18) each have Crohn's, one had to have surgery last year. I've always said that at least I put this shitty disease off until I was 40, but they have to deal w/ it at such young ages.

@PaulsPain, you are correct that there aren't many options for the peri-anal part of this disease. And for me, I've never had the peri-anal issue up until a week ago. Right now I'm in so much pain that if they wanted to inject acid into my system I'd tell them to go right ahead. And here's a little secret...my mom was the healthiest person I ever knew. Long story short, back in the mid 80's she fell off a ladder cleaning windows and got a compound fracture. They were never able to fix her leg properly again. 2 yrs after that, she found a lump in her breast which they removed then a few months after that she had horrible headaches & double vision. Turns out she had tumors scattered throughout her brain. She died 3 months after being diagnosed. She was a picture of health one day and cancer ridden a few short years later. We can't control our destiny 100% of the times. I'm just happy that I have an insurance company who will pay for my treatment and I consider myself lucky to have the Remicade option at this point.

Hugs to you both and what you each deal with. I just keep telling myself "it could be worse"...and I truly believe that.
 
I guess I'm at a point where I have to do something about the Crohn's regardless of cancer scares or not. I have read about the possibilty of Remicade causing cancer but like Brian's mom says, NOT doing something is not an option for me anymore.
Absolutely. At first I resisted the idea of Remicade - putting biologics as my "last resort". After suffering for over a year with an increasingly strong flare and no medications being effective, I was practically begging to start the Remicade. Crohn's is no joke. It will take you down if you don't do something about it.
 
When someone expresses fear over the side-effects of a particular drug I like to mention that there are side-effects to uncontrolled Crohn's disease. They are typically much worse and much more likely to happen than the side-effects associated with the medication.
 
But side effects can be used to weigh one treatment against another. It's very seldom a question of treat or not.
 
I agree I only meant to emphasize that the side effects of uncontrolled Crohn's are dangerous by them self including risk of cancer.
 
Thanks to everyone for their opinions here. I now have to face the choice of Remicade and have been worried. What I hear loud and clear though is that there is not a "do nothing" option in this game because untreated the Crohn's will suck you down. I'll see if Remicade keeps me afloat (preferably buoyant!) and if not I'll find something else.

It may not be pleasant but we are drawn into a war we didn't ask for and we have to be prepared to use the available weapons we have and prepare for some failures and retreats on the way to victory. Then we probably have to start all over again some time later.

It's a very bad deal but a whole lot better than what is happening to billions of people all over the planet today. We do have weapons and they may be scary but WTF.
 
art_nj - Would like to know more about this pancreas/Crohn's connection! I was hospitalized in July w/what I thought was CD issues, turns out I had pancreatitis! The docs were freaking out to find a reason why, I had my gallbladder removed 6 years ago, so of course they asked me about alcohol. I don't drink at all! I don't think some of them believed me, they really couldn't find a reason why I would have gotten it.
 
Top