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Remicade for mild symptoms - scared to take.

Wed, March 06, 2019 3:30 PM

DISCLAIMER: I am not one of those wholistic anti-medicine people. I take a lot of medicine daily for other conditions but given my disease history and the options available I’m super worried about taking infusion meds. 

Hello. A brief background on my disease. My whole life i would have these mini flares of huge stomach distension, pain, and vomiting. They would last about 24 hours a few times per year so i wrote it off as just frequent stomach bugs. I had an emergency small bowel resection in 2013 from a blockage. They discovered I had a rare congenital disorder called Meckles Diverticulum. They removed this birth defect from me and I was supposed to be cured. It explained my lifelong symptoms—so I thought. 

After recovery I started having pain, huge distention, and I could NOT go to the bathroom or pass gas. Most of my life I was constipated and I rarely have diarrhea (in fact i GAIN weight) Despite the fact that my symptoms weren’t classic, the diagnosis after years of testing was Crohns. 

In the years my diagnosis was uncertain I went into a 2 year remission that ended with return of symptoms and a firmer diagnosis. Interestingly, my remission coincided with me eating healthy and doing yoga daily. I injured my foot and couldn’t practice yoga and got lazy and my stomach symptoms returned almost immediately. 

My GI now insists I need to be on remicade. (The only infusion my insurer approved). I read about the side effect and how it seems to cause psoriasis and arthritic pain as well as weight gain etc. and I truly do not want to take it. 

My  symptoms are unpredictable but they aren’t every day. Am I wrong to think I’m okay without medicine if I can handle the symptoms ?  I can’t help but think of how i went into remission (while the Crohns diagnosis wasn’t 100%) by eating healthy and being very active. 

My doctors have said I’m mild to moderate in disease activity. It stinks dealing with the symptoms but honestly the medicine options give me such anxiety and fear. 

Ive spoken to her about this and she still thinks I need to take the medication. I feel so helpless. 

Please share your input and own experiences dealing with medication.  

FPO EmilyGreene
Joined Mar 6, 2019

Wed, November 20, 2019 8:32 PM

Reply posted for ccfschul.

I am very grateful that you posted this concern. My son is 17 and A freshman in college, and has spent four months on the SCD diet. I've never seen him more energetic and having gained 8 pounds in that short time. Unfortunately, his labs did not reflect the physical difference we are seeing. He has been on as a thigh a prime without an issue, but now they are telling him he needs to go on hue Marah. I am honestly confused as to why they are recommending this when all his labs look excellent. I have read 21 journal articles through and I age and pub med, and I am terrified of the side effects that could be for him. A freshman in college, and has spent four months on the SCD diet. I've never seen him more energetic and having gained 8 pounds in that short time. Unfortunately, his labs did not reflect the physical difference we are seeing. He has been on AZA without an issue, but now they are telling him he needs to go on Humira. I am honestly confused as to why they are recommending this when all his labs look excellent. I have read 21 journal articles on Humira and pub med, and I am terrified of the side effects that could be for him.I think he is willing to do a version of a CD but he hast to be fully committed.

FPO Sprout
Joined Nov 19, 2019

Fri, October 18, 2019 11:42 PM

Reply posted for Denise.

Hello...LDN is Low Dose Naltrexone.  If you google that and Crohn's disease you should be able to find a lot of information including a couple of studies conducted through Penn State which had dramatic results and Dr Behari who discovered its effect while successfully treating AIDS patients in the 80s. . Basically, You take 3.5 or so mg before bed...and it resets your immune system by increasing  endorphin levels and then releases them while you sleep. I am sure there is a better scientific explanation! There are also LDN sites and at least one fb group. I hope this helps!

FPO belle
Joined Aug 10, 2009

Fri, October 18, 2019 6:56 PM

Reply posted for belle.

What is LDN?

FPO Amanda Brown
Joined Oct 18, 2019

Thu, October 17, 2019 11:07 PM

Reply posted for EmilyGreene.

Hey Emily So....I couldn't agree with you more! I have been on entyvio for a year now and let me tell you it makes me feel worse than anything. My doctor is very resistant to letting me off the meds too. I feel nausea, MAJOR fatigue, my joints hurt a lot of the time, I have FREQUENT migraines literally on day 6 of a migraine. I also get diarrhea and stomach pain as well. Not to mention I am only 27 this is not quality living. I have never taken meds in my life until last year starting April. I can't cope with being on medication not to mention the long term effects that can potentially happen. I brought this to the attention of my doctor and she denied that there are long term effects .....lets be real now there are long term effects to EVERYTHING unfortunately this drug has not been on the market long enough to have long term effects so essentially we are the guinea pigs and WE are risking our lives here. I wouldn't do the infusions if you do not have to I am actually switching to a holistic doctor because its my body and I am not risking my life for these drugs. I personally believe through eating right and exercise you can heal yourself. Its your body don't let a doctor decide what's best for you only you know how you feel not them.

FPO Bohonerd
Joined Oct 17, 2019

Wed, October 02, 2019 12:40 AM

Reply posted for Denise.

Hi Belle,
What is LDN? I was very exited when I read your post but I can not find mention of it anywhere else and even a google search turns up nothing. Thanks

FPO Denise
Joined Oct 2, 2019

Wed, October 02, 2019 12:38 AM

Reply posted for belle.

Hi Belle,
what is LDN?  cn not find mention of it anywhere esle and even a google search turns up nothing.

FPO Denise
Joined Oct 2, 2019

Wed, August 28, 2019 3:54 PM

Reply posted for TT86.

I came on here because I was curious about CBD oil... but reading all these messages about humera/Remicade etc. I had to let you know my experience.  Dx 36yrs ago @ 16 and was put on prednisone and Asa drugs. Felt my absolute best when pregnant but then flared both times afterward.  I was very sick when my kids were young and prednisone was the only thing to put me in remission. Doctor said biologics were the next step. I refused and did research. I found LDN and my naturopath agreed that it was a good option for me. It changed my life! I find it hard to believe it’s not more widely know and/or used. It is inexpensive and not a money maker for pharma and that is why Doctors don’t promote it. I have been on it for 11 years without any other meds. I urge anyone who is suffering with autoimmune disease to look into it.

FPO belle
Joined Aug 10, 2009

Thu, August 15, 2019 5:21 PM

Reply posted for ccfschul.

New to this site and very thankful for everyone's questions and input. 

My daughter has been on Pentasa (the highest dosage) for two years due to her Crohn's.  The problem is located in her small intestine, somewhere between where the endoscopy ends and the colonoscopy begins, and unfortunately, after the latest PillCam endoscopy, the Pentasa has proven to be ineffective.  Her condition has worsened.

Her GI highly recommends Remicade, and secondly Humira.  After researching both, I am reluctant to turn to either of these treatments, and will soon seek the opinion of another GI near where my daughter will be attending college this fall -- another obstacle for us -- in the hopes there is another solution.

I've tried to get my teenager to just consider the SCD diet, to no avail.  The GI says unless she is fully on the SCD, her symptoms will not improve.  A family member recommends naturopathic medicine.  I have to believe that there is something out there that can help my daughter other than Remicade and Humira. 

Have any other patients or caregivers gone through this?  Has anyone had success with either one of these treatments without any of the horrible side effects?  

Thank you.  Good luck and good health to everyone reading this.

FPO ccfschul
Joined Aug 13, 2019

Mon, July 01, 2019 7:46 PM

Reply posted for EmilyGreene.

We feel the same way. My wife has ulcerative proctitis. When in a flare it’s hard to break but she was in remission for over a year without issues. First doc wanted to jump straight into humira, so we got a second opinion. He tried a few things, and now after saying wouldn’t ever want her on humira, has decided thisis what he would like to prescribe. It’s scary for sure. A quick google search is enough to swear you off of the stuff for life! I think we will see an IBD specialist and maybe understand the situation a little better. I think it’s reasonable for you to balk at the medication. it’s not to be taken lightly and you’re right to question what’s right for your body. 

Joined Jul 1, 2019

Thu, June 13, 2019 12:31 AM

Reply posted for EmilyGreene.

Hi, I have had UC for over 20 years my Dr. as well wants me to start Entyvio.  I feel we are exactly the same with eating healthy and exercise.  I have taken anti inflammatory drugs but never the strong drugs.  My doctor said she wants to try to heal my colon with the medicine or at least make it look better/healthier.  Im scared to try it after reading all the side effects.  Trying to research before I make my decision.    I don't like that the drug suppresses my immune system, but its my immune system attacking me.   Before I start the drug I will go get all my immunization shots up to date.  Do your research and good luck.  We both will need it. 

FPO cherrylynnb
Joined Jun 13, 2019

Mon, March 18, 2019 1:09 PM

Reply posted for EmilyGreene.

My fiancee took this right when he was diagnosed, 2011 at age 19. He really regrets jumping to a drug so quick, especially one so heavy. He is no longer on it. Ironically, his doctor told him diet doesn't matter! He said that the side affects were no longer worth it. Also, once you stop it you might not be able to get back on it because it can likely cause a bad allergic reaction and you will have to be hospitalized for reintervention. During treatment they also give you iv drip of benadryl to prevent reaction, which didnt worry him, it made him insanely tired and feel weird though. It was the fact that if he stopped and wanted to try again, it would be dangerous. He wishes that he would have held off for when things got more serious. I would do as much research and also ask for a case manager from your insurance. They communicate between doctors. Also, ask for a referral to a dietician. Ontop of treatment, educating yourself and working on a diet plan that keeps you healthy and avoids flare ups, is really important.


FPO sdavis75
Joined Mar 18, 2019

Wed, March 06, 2019 7:10 PM

Reply posted for EmilyGreene.

Doctors take several different routes on medications. More doctors are using the top down approach to medications by starting with biologics such as Remicade to help prevent future complications and even prevent the chance of getting surgery in the future. The other approach is the bottom up approach in which doctors start with lighter drugs such as mesalamine and you work your way up if your disease progresses. Either approach is ok.

As for being scared about the medication, I have been on Remicade since August and I have been doing great. In a few days after my first infusion, I felt entirely normal again. I have not experienced any side effects. Side effects depend entirely on the person, it's different for everyone. Also, Remicade is safer than several other immunosuppresants such as 6mp and Imuran.

I hope this is helpful for you and good luck!

FPO andrew 2012
Joined Dec 13, 2018

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