Biologics

Hi Lisa,

I was on Remicade for about the same amount of time that you have been. It had a nice effect the first few times, but after that, I really didn't notice a positive change. I had the option of trying Humira, but I was just so sick. When a colonoscopy showed that my inflammation was still really bad, my doctor recommended the surgery and for me, it wasn't a question of what to do.

(Disclaimer: I'm a scientist and have done a lot of research on this, so I apologize ahead of time if I ramble or am telling you what you already know I have heard of people doing better on Humira than Remicade--and off the top of my head, I believe that Crohn's patients tend to show more responsiveness to Humira, but that might just be a conclusion drawn because more research has been done with Crohn's and Humira than UC and Humira. From a technical standpoint, since Humira is a human-based protein biologic, there are real reasons that it might work better Remicade, which is mouse-based. It's just so hard to predict how our very individualized immune systems are going to respond to a given therapy.

If I hadn't been so sick, I would have definitely have given Humira a try, but my symptoms were just so bad that I really didn't feel like I could handle (both physically and emotionally) another failed therapy.

Does your doctor plan on doing a scope to check how you are responding to Remicade?

Like jax said my GI indicated Humira is human-based so theoretically it should work better. Unfortunately when Remicade started failing for me, Humira was not yet approved for UC. My doctor tried to get my insurance to pay for it, but they denied the claim. So I didn't get to try it, but I definitely would have tried it if I had the option. I went for J-Pouch shortly after and have luckily have been very happy thus far. But I needed to try everything I could before I was mentally ready for the surgery.

RWNC that is what happened with me as far as the Remicade goes. Humira was my GI's first option but wasn't approved by my insurance for UC. Had the j pouch (8 months out) and not really doing any better. Had a prometheus test (blood work) which showed I have Crohn's markers instead of UC. Still surgeon and GI are questioning this test but I really believe that is what I have now. I even contemplating trying Humira just to see if it makes me better now. Not sure what is next for me...!

Roberta

I was on Remicade when I had UC and it never really worked. I saw a small improvement with the 3rd infusion but then it all went down hill from there.

Roberta,
I don't have much faith in the prometheus test. And you know what's really weird? I have been seeing a hematologist for anemia issues and he ran a whole bunch of tests on me. He told me I have markers showing up that indicate Crohn's. I know I don't have Crohns because I have been fine since my colon was removed and my j pouch works fine. If I had CD I'm sure I would be having problems still. IBD is so damn complicated.

Hi Lisa
I too tried remicade and did 8 infusions with no positive results. Mentally I was still not ready for the jpouch so my last resort was trying an experimental procedure called fecal transplant therapy. This seemed to work great for a couple of months at which time I was the best I had been in 4 years and then it all went down hill and I got so bad with my UC that I had to go in for emergency surgery in Dec of last year. I had the reversal in July of this year and am very happy with the decision. The road of recovery has definitely been bumpy with butt burn, pain, itching and cramping but compared to UC it is a lot better.
Good luck.
Crick

Marianne-
Regarding the prometheus test the GI and surgeon agree with you regarding the test. However, I am reluctant to think this way because I am still having trouble and I still feel like I have a disease within me. I have contractions going, nausea, vomitting and 3 weeks before Xmas I had mouth sores in my mouth. Not sure what the hxxx I am doing wrong. Trying to stay positive but......! When I had UC even with all the bleeding I did I still felt stronger. I am so weak and muscles still atrophy and I am 8 months out.

Roberta

Roberta
Sorry you are still struggling. It certainly does sound like something is still going on inside you. I hope you can get some relief and answers soon. If I recall right, you had your takedown back in the Spring. That's a long time to still be feeling poorly.

You are right Marianne end of April. That is what I thought too long for same old same old. Off to acupunturists today. Hope she can help me out!

Roberta