Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

Failed Humira, and now Remicade, what’s next?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
UC_girl
Regular Member
Joined : Jan 2014
Posts : 74
Posted 2/26/2021 10:48 AM (GMT -6)
Hi everyone,

I’ve finally come to terms that Remicade is no longer working for me. I am on the highest dose every 4 weeks so I cannot bump it any higher. It worked decently for 2 years but I never experienced true remission. It made me “comfortable” but I still had inflammation, diarrhea and cramping even on my better days. I tried humira before and saw no improvements. I’ve been flaring lightly for the last 8 years almost.

I have severe pan colitis. I am allergic to all mesalamines and they worsened symptoms significantly.
I have tried mercaptopurine but every time i use them I don’t see any improvements and they cause my liver enzymes to skyrocket and doctor is too afraid to put me back on them yet.
I am also steroid resistant (prednisone and Uceris) so they do little to curb a flare.


Which medication would you try next? I am currently experiencing UC symptoms but I’m not in a full blown flare. As soon as I’m off the Remicade for more than a week I begin to flare horribly. Something that is fast acting would be preferred.
My doctor has mentioned Stelara and Entyvio.
I’ve also heard of Xeljanz and Cimzia?

Based on me seeing a little improvement with the remicade, is there one medication you would try first over another?

I’d would appreciate any insight.
profile picture
TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8705
Posted 2/26/2021 11:02 AM (GMT -6)
AIP diet in addition to what you are currently doing -

TT
profile picture
UC_girl
Regular Member
Joined : Jan 2014
Posts : 74
Posted 2/26/2021 11:22 AM (GMT -6)
Any suggestions for starting the diet, and do you have any meal plan suggestions?

I have tried SCD in the past as well as another that I cannot think of the name but I didn’t see results with either. I do try and avoid sugary, high fat, processed foods, but I can’t say I’m perfect... it was definitely harder to stick with the diet when I didn’t see results.
profile picture
poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1487
Posted 2/26/2021 12:12 PM (GMT -6)
I think cimzia is another tnf inhibitor so I wouldn't choose that because you've not really had a full response on two other tnf inhibitors.

Any of entyvio, stelara or xeljanz are worth trying. Impossible to predict which one would work for you (unfortunately).
profile picture
UC_girl
Regular Member
Joined : Jan 2014
Posts : 74
Posted 2/26/2021 1:17 PM (GMT -6)
Thank you for your thoughts!

I think the doc is leaning towards Entyvio or Stelara. However I’d love to have the freedom of pills that Xeljanz offers.

Is anyone aware which of these is the fastest acting drug ?
profile picture
poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1487
Posted 2/26/2021 1:51 PM (GMT -6)
Xeljanz definitely the fastest, if it's going to work for you. Most people notice something in the first week. Entyvio takes weeks or months to have an effect.
profile picture
limey
Regular Member
Joined : Sep 2016
Posts : 185
Posted 2/26/2021 2:22 PM (GMT -6)
Xeljanz started working for me within two days and that was two years ago.
I even went off it for 3 weeks when I had a knee replacement and stayed controlled for the first two weeks.
profile picture
UC_girl
Regular Member
Joined : Jan 2014
Posts : 74
Posted 2/26/2021 3:04 PM (GMT -6)
If I go the Xeljanz route, does anyone have an idea on actual cost?

I looked it up in my pharmacy benefits and it does say that it’s a covered drug, but it’s $4733 for a 30 day supply.
Does Xeljanz have a savings program to help make it more affordable?
profile picture
straydog
Forum Moderator
Joined : Feb 2003
Posts : 18873
Posted 2/26/2021 6:06 PM (GMT -6)
They do have an assistance program, check out their website. I believe they have a phone number you can call & talk to someone & they can check your insurance coverage.

Here is the number to call; 1-844-935-5269
profile picture
UC_girl
Regular Member
Joined : Jan 2014
Posts : 74
Posted 3/2/2021 12:26 PM (GMT -6)
Thank you for the help!

Doctor seems to want to start Entyvio first, because apparently Xeljanz holds many risks in pregnancy. They said they typically try and avoid prescribing that in child bearing age females, even tho I have no intentions of conceiving any time soon.

She still wants to try and do a colonoscopy but I’ll have to figure out finances before I can schedule that.
profile picture
poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1487
Posted 3/2/2021 4:12 PM (GMT -6)
Hmm well, I'm a female of child bearing age, and I've been taking xeljanz for 2 years. I would guess the risk factor is blood clots, which has been demonstrated for arthritis patients over 50 with comorbidities taking xeljanz at a high dose, and not yet established in UC patients (who mostly only take the high dose during the first 2-4 months to induce remission). My GI isn't keen on me taking birth control pill as that can be an added risk factor for thrombosis but I'm also skinny and very active physically. Noone mentioned any risks related to pregnancy and it certainly wasn't a consideration when i was choosing between xeljanz and entyvio. Also, flaring while pregnant is far more risky.
profile picture
straydog
Forum Moderator
Joined : Feb 2003
Posts : 18873
Posted 3/2/2021 8:41 PM (GMT -6)
Here is a possible option, drs, dentist, hospitals, out patient medical facilities & veternarians offer what is called Care Credit, I believe is the correct name. It is an interest free loan as long as the monthly payments are made on time. People use this because of high deductibles or they just don't have the money.

Something to think about.
profile picture
UC_girl
Regular Member
Joined : Jan 2014
Posts : 74
Posted 3/4/2021 6:44 PM (GMT -6)
Interesting! I’ll have to ask about the Xeljanz again and why they wanted to use that as a last resort. I actually mentioned it first because I thought the freedom of pills and fasting acting nature would be beneficial for me. I don’t mind the infusions but they are kinda a pain to schedule with work.


And yes I have heard of care credit. I will do it if I have no other choice. I just really hate having to put myself in debt to manage my illness. Not fun at all 😔.
profile picture
TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8705
Posted 3/4/2021 8:56 PM (GMT -6)

UC_girl said...
Any suggestions for starting the diet, and do you have any meal plan suggestions?

I have tried SCD in the past as well as another that I cannot think of the name but I didn’t see results with either. I do try and avoid sugary, high fat, processed foods, but I can’t say I’m perfect... it was definitely harder to stick with the diet when I didn’t see results.


maybe give this a look - the inter-web is full of AIP info >

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

TT
profile picture
suzy-q
Regular Member
Joined : Sep 2015
Posts : 261
Posted 3/5/2021 4:44 PM (GMT -6)
My husband has been on Xeljanz almost 5 years. It was the game changer. The nice thing was that within two weeks he could tell that it was working. He has been in full remission since Oct 2016. We are very fortunate to have insurance that covers it. I joke that it’s the most valuable thing in our house. Good luck.
profile picture
UC_girl
Regular Member
Joined : Jan 2014
Posts : 74
Posted 3/9/2021 5:06 PM (GMT -6)
Thank you for all your replies!

My doctor is pretty adamant that we start Entyvio . I’m going to remind them of the Xeljanz one more time before the switch is official.


I thought Remicade was somewhat working but my last lab results indicate otherwise.
My CRP levels were extremely high. So we did a test for C - Diff which came back negative.
Also did a fecal calprotectin test and results were over 6000.... doctor is very concerned at this point.
She wants to start prednisone but I never get any relief , only side effects. So praying insurance approved Entyvio soon and it works quickly 🙏🏼
✚ New Topic ✚ Reply


More On Ulcerative Colitis

7 Ways To Support Someone With Crohn's Or Colitis

7 Ways To Support Someone With Crohn's Or Colitis

Prebiotics And Probiotics: A Simple Guide

Prebiotics And Probiotics: A Simple Guide


HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
Facebook Twitter Instagram Pinterest LinkedIn
© 1997-2022 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.