Not Responding To Remicade Anymore


My names Erin, I wrote a complete background on myself in my last post (can be found in young people section) so i won’t go into much detail here, feel free to check it out.

My Symptoms:

rather crampy, loose stools, generally crappy feeling, the usual.

My Story:

Ok, so I posted a few weeks ago when I was just starting into a flare. I talked to my doctor and he thinks that I am just not responding to the remicade anymore for whatever reason, I guess that happens sometimes, so i need to change meds, no big deal right? So he decides to put me on humira.

remicade stopped working comic

I have done quite a lot of research on it and can’t decide weather to be excited about being on it or scared of it because apparently its like some miracle drug but also rather painful. Anyway my doctor went through the process of getting it approved with my insurance and apparently it was denied. Now we have to try to appeal it but who knows if they will.

Normally I’m fine with complications and what not, this has taught me to be very patent and understanding with these things but this is a little different. I seem to be running out of choices for meds to go on. during my 15 day hospital stay four years ago I went through them like TP. it turns out i have bad reactions to most of them (seizures, hallucinations, ext.). so if this isn’t approved I’m not sure if there will be anything else to try before surgery. I mean I have come to terms with the fact that ill probably have it eventually but i was hoping it wouldn’t be during the school year. And I’m not quite ready for something like that, its no small procedure.

I’m really scared myself but i cant really tell my family because they are so worried already and that will only make it worse for them and therefore worse for me. I am very thankful for sites like this that allow us to talk to people who understand.

Any advice for me? anyone been in the same situation, if you have how did you survive it?

Colitis medications:

In chronological order:
sulfasalazine, worked for a long time then stopped
asicol, didnt work
something i cant remember the name of, made me halucinate
tacrolimus-transition drug for 6MP, gave me seizures
remicade, built up immunity

plus pregnizone on and off

written by Erin

8 thoughts on “Not Responding To Remicade Anymore”

  1. Hi Erin. Wow. you have been through ALOT. I’m glad you made it through your hospitalizations and recoveries. I was diagnosed with UC last Dec, and none of the drugs worked (you can read the gory details in this blog: My colon became toxic w/in 2mos of being diagnosed, so it had to come out. I am sooooooooooooooo glad it is out of me!!! This has been a rough year, and surgery can be scary, but, the good news is, you heal and don’t feel sick anymore. Hooray! I’m currently waiting for the 3rd of 3 surgeries – I had a j-pouch procedure. Good luck with everything, and I hope the humira works for you!!

  2. Hi Erin!
    Sounds horrifying! Maybe the fact that your insurance doesn’t cover Humira is a blessing in disguise? Have you tried a holistic approach? Just wondering.
    I hope you can overcome this medicine roller coaster hell soon and will be as good as new in no time!
    Best to you!

  3. Erin,
    sorry to hear about the remicade no longer working. How long were you on it? I hope you can resolve the insurance situation. Don’t give up. You’re just a number to them so you have to keep at it until they relent. Best wishes.


  4. Sorry to hear what you are going through!
    Did you try some kind of diet?
    I was for one year on Remicade, and at the same time i have started a vegan diet…yesterday it was year i am drug free and fine..
    Good luck for what ever you decide to do!!


    1. Can you give more detail on your diet and how bad we’re you when you started? Thx, I’m new and need any info I can get to make a decision . Thx

  5. Erin,
    Attempt number three on my tablet…
    First, so sorry to hear your news. Second, I can relate. Third, there is hope. (My current story was posted a while ago…
    grimm-reaper-uc-1-year-med-free-and-counting-take-that/…I hope you will read to see there is hope)
    I wrote to you before on your original story.
    You seem to be in a position to give some things a try?? I wish you the best…let us know.
    Best, Shelly

  6. Erin
    Glad you feel you can share feelings here. You have been through a lot! Congrats on pharmacy school. My sister is a pharmacist.

    It is hard for those close to us to deal with this disease also. Learning to be there for each other can be tough..

    Insurance…do not give up!…appeal if you desire to try Humira… I attended a cont ed insurance meeting and it was an eye opener on how they decide to approve and deny….

    It is scary to really look at surgery in the face, so many emotions, facts at once hit…My former brother in law was a naturopathic physician that died of colon cancer. He was going to cure himself…he refused to see a medical dr until it was too late….His colon had to be removed and discovered the cancer had spread…died within a couple years after that. What I learned from him was a balance is needed. There is a time and place for naturopathic and medical intervention.

    I love ridding horses. We had to put one down from cancer this summer.. UC has taken that along with other passions. I can honestly say I have given all things a try and have chosen surgery..My diet, probiotics, vits, have staved the need of prednisone since the end of may..:-) The surgeon says I’m relatively healthy and will help with healing. Do I want to loose my colon? NO! I really want this to all go away but it doesn’t. I keep thinking there will be a cure and sure someday there will be. Not in my day..for me I dont want to be like my former brother in law and be too late…

    I did humira back in 08-09. It kicked the UC and gave me pustular psoriasis. you can read about that in my story…You are educated and will make the right decision for you…Am I glad I tried it? Yes.

  7. Erin,

    I was diagnosed with UC in October 2011, but have had symptoms since January 2009. Since my diagnosis, I started on lialda, then added on some azathioprine and in June when I relapsed for a third time, we tried remicade. I had serious reactions to it, like chest pains, shortness in breath and was constantly dizzy, so they pulled me shortly thereafter. I then switched to Humira. It’s scary to inject yourself and the worst part is probably the obnoxiously loud click when you push the button, but it’s not unbelievably painful. However, when I started, they told me that there’s a program set up to make sure everyone only pays $5 for every two pens. You may want to ask your doctor about it, though I’m not sure what it’s called. Unfortunately, I just flared again, so the drug didn’t work for me for any longer than a week, but I’d say it’s worth the chance if you can… Best of luck to you!

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