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Remicade no longer working - future options

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Posted 6/11/2014 11:11 PM (GMT 0)
Hi Everyone

It has been some time since I have posted here; although I still read the forum periodically depending on my level of disease intensity I am currently experiencing.

I have been on remicade for about 3 years, I was taking imuran at the same time. I moved locations for a job after finishing university and my new GI said that imuran/remicade combination greatly increases my probability of contracting t-cell lymphoma (terminal disease). I was taken off of the imruan and subsequently went into a flare. At the same time I had a tooth abscess and had to take a lot of antibiotics. Then I was diagnosed with c-diff.

So now I am currently flaring, contracted c-diff, and my UC management medication is no longer effective.

My current GI said that I can try humira, and or a humira/methotrexate combination. He also stated that no longer term studies exist regarding side effects of these biologics and immunosuppressants. He said I should also consider surgery (j-pouch).

I am going to ask that he perform a fecal transplant (approved for c-diff), and cross my fingers that the procedure helps with both the c-diff and UC.

***A question to those who have had the j-pouch procedure: would you recommend it?***

I am concerned that going on another medication regime, in this case humira/methotrexate, will alleviate my UC for a short period. However, this approach is temporary and I am only prolonging the inevitable (j-pouch procedure). Not to mention the colon cancer risk of +5% (cumulative) annually. So in 20 years I have a 100% chance of being diagnosed with colon cancer. How my GI explained it to me. And side effects of the medications.

Currently taking:
35mg prednisone (dropping 5mg weekly - started with 40mg)
300mg remicade every 8 weeks
4g salofalk orally
1g cortifoam rectal enema nightly
500mg vancomycin daily for 2 weeks

Any comments are greatly appreciated.

My BMs have decreased from ~30 to the current 10 or so. Lots of blood and mucus, including abdominal discomfort, straining, and hemorrhoids. Not to mention pooping my pants about 5 times in the last couple of weeks. Lovely.

Thanks fellow UCers. I hope the tone of this post isn't too negative. Just a little annoyed and let down at the moment. I have had UC for approximately 10 years. I am 28 years old. Previously steroid dependant.

Post Edited (JamesonM) : 6/11/2014 5:15:51 PM (GMT-6)

Posted 6/12/2014 12:21 AM (GMT 0)
Yes, from my personal experience, I highly recommend the j pouch procedure. I was in the same predicament as yourself. The Remicade didn't work (never did from the start) and I was out of options. I did not want to try Humira because I was really, really sick at that point and I was afraid to waste more time and get even worse. Plus, I was so emotionally drained too from the UC and I wanted to be done with it. The thought of more drugs and the unpredictability of the disease was more unappealing than surgery to me. So I was really ready for surgery which I think is important. You have to be there mentally too. It's really important to have a highly skilled surgeon to do this procedure.

It's a big decision. Put it all down in writing with lists of pros and cons. If you feel you're not ready for surgery then buying some more time with Humira may be something to consider but honestly it would probably be just that....buying some more time. Best of luck.
Posted 6/12/2014 12:29 AM (GMT 0)
Thank you for the response ByeByeUC. Your comments are very welcome and appreciated. I am sifting through previous posts from other forum users related to the same topics.

Cheers
J
Posted 6/12/2014 1:03 PM (GMT 0)
Did you get these statistics for colon cancer from your GI?

The numbers I see everywhere is that for pancolitis it is 1% cumulative each year, so 20% in 20 years, 30% in 30 years. And there is some hope that some recent medication like mesalimine reduces the risk.
Posted 6/12/2014 3:52 PM (GMT 0)
I had jpouch surgery 13 years ago, long before Remicade and Humira were options. I've never regretted my decision and have been healthy, active, and happy post surgery.

Sue
Posted 6/12/2014 4:06 PM (GMT 0)
It's hard to judge your flare until you get rid of the c.diff because it will mimic a UC flare or intensive it.

I chose never to take imuran/6-mp while I was on Remicade for that reason. What is your current dose Remicade? Is it a double dose?

I recently had j-pouch surgery (I get reconnected in 13 days) and I just feel so much better now that my colon was removed. I tried Humira and Simponi, for me they were a waste of time and didn't really do much for me. Remicade was great for me for about 5 years until it stopped working.
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