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Which med to try first??


Thu, January 17, 2019 2:05 PM

Hi Everyone, This is my first post. I've managed my Crohn's with diet only (low fodmap) until now. This has worked GREAT for symptom control, but my colonoscopy still shows multiple ulcerations, and my doc is worried about one of them in particular. She is wanting me to start Humira, Cimzia, or Remicade, in conjunction with azathioprine for the first 6 months. I'm wondering if anyone has comparative experience for these meds, as I'm scared of all of them! Tempted to go with Remicade just because it has more history, but not excited about in-office infusions instead of shots. Thank you for any info!! -J

FPO justmarie17
Joined Jan 17, 2019

Sat, March 02, 2019 5:06 PM

Reply posted for charbs.

I agree. Plus, I had a very bad reaction to Remicade -- first a rash, so the doctor stopped the infusions for awhile. Then he had me start again, but on the third infusion, I felt an odd sensation all over and couldn't breathe. The nurses were right there and stopped the infusion and I was OK soon after. Now I am on Entyvio, which has no side effects that I can see and takes much less time.
Best wishes!

FPO Cathryn
Joined Mar 2, 2019

Wed, February 20, 2019 9:47 AM

Reply posted for justmarie17.

I get it- I also am not fond of taking medication which is why my GI was upset with me when he found out I stopped taking the oral medication he prescribed (I can't recall the name) when I first started Remicade.  He told me that by taking the oral medication in addition to Remicade it has shown a longer tolerance of Remicade.  I didn't know this prior to upsetting him- I seriously love my GI, he is someone that personally cares about his patients.  I remember telling him I took Ibuprofen and his face turned red immediately.  Even though you don't want to take medication- or at least limit what you are taking- there are usually valid reasons why the GI is prescribing them.  I would have a heart to heart with your GI to express your concerns.  Another reason I went with Remicade is that it is safe for pregnancy- I was 26 at the time and knew I wanted to have kids some day... Remicade made it possible for me to have two healthy pregnancies and now I have the most wonderful little boys, and I honestly owe it all to my GI for helping me to find remission so that I can have that.  I wish you the best in finding what works for you! 

FPO JRWILSON
Joined Jan 14, 2019

Wed, February 20, 2019 8:53 AM

Reply posted for justmarie17.

Hey OP!
I started Humira back inAugust 2018 after 12 years of being on oral medications. It is the first biologic I've tried and I'm hoping its the last. The injections are pretty easy to administer and they now have a citric-free formula so it doesn't burn going in. I haven't expereinced many side effects except after the first dose. It's taken longer than I was hoping or expecting but so far I'm doing well on it and definitely seeing improvements in my UC symptoms. I can't say much about how it helps with pain because that was never one of my main symptoms, but as for blood and loose stool, it helping. I've heard a lot f good things about Remicade and I know it's in my future if humira doesn't work, but so far my experiences with humira has been pretty positive. 

Hope this helps in making a decision! 

FPO KRiegel
Joined Feb 4, 2019

Fri, February 15, 2019 6:45 PM

Reply posted for JRWILSON.

Thanks, I finally made it back on here to read more closely, and that helps. My doc is basically letting me pick which med I want to try first, and I am going back and forth because of potential side effects, and worrying about whether the newer meds are as safe, etc. Humira, Cimzia, and Remicade are the options she mentioned, while also taking Azathioprine for six months. I'm someone who hates taking medication, so this is a big deal for me!

FPO justmarie17
Joined Jan 17, 2019

Mon, January 28, 2019 4:36 PM

Reply posted for justmarie17.

I was using Remicade for about 5 1/2 years- Remicade was a serious game changer for me.  I was in so much pain with my UC and it was like a switch overnight.  I did end up developing psoriasis and had 4 skin infections last year which lead to me switching to Entivyo.  I have had my first three intro infusions of Entivyo- it is going ok.  It doesn't feel like a game changer like Remicade did and I have had consistent canker sores which as we all know is miserable.  I have a colonoscopy next month so I will find out the state of my colon but am hopeful entivyo is working for my colon health.   I thankfully have not had to take steriods to treat my UC since I started a biologic in March 2013.  It was the BEST decision I have made.  I was absolutely miserable prior to starting Remicade- I seriously couldn't walk a block without being hunched over in pain.  Obviously diet and exercise will make a great difference in your success as I believe any treatment will be more successful if you are doing your part.  I do not supplment Entivyo or Remicade with any additional medicaition which origianally upset my GI.  I hope this info helps!

FPO JRWILSON
Joined Jan 14, 2019

Mon, January 28, 2019 4:00 PM

Reply posted for justmarie17.

I have been on remicade since 2013. Ever since, the hospital has claimed that I'm in remission based on their studies and blood work results. Despite that false claim, I still have occasional bloody stools, frequent symptoms and side effects such as mouth sores, psoriasis, abdominal cramping, etc. So we finally switched hospitals, and the new GI wants to switch me to Stalera, which is much newer and so far appears to be more effective. I haven't started my first Stalera treatment yet, because I am seeing if natural remedies like a healthy diet, correct vitamin supplements, exercise, and a little pot ;) may be able to make a difference without the biologic in my system. So far, I feel much better than when I was on remicade! If I experience less symptoms, I'll probably keep my treatment as is. If it ain't broke, don't fix it!

FPO hockeynut8
Joined May 1, 2014

Fri, January 25, 2019 7:00 PM

Reply posted for charbs.

Thank you. I appreciate that info. 

FPO justmarie17
Joined Jan 17, 2019

Thu, January 17, 2019 2:27 PM

Reply posted for justmarie17.

I don’t have any advice to really help here except if it is an option for you, entyvio
takes half as long to infuse as remicade

FPO charbs
Joined Oct 31, 2016

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