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Medications not working.. advice?

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Ulcerative Colitis
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Posted 7/27/2015 5:43 PM (GMT 0)
I was diagnosed almost two years ago, and still have not reached remission. I am currently on Remicade every 8 weeks (Since February), and have had little change in my symptoms. My GI is having me come in for yet another colonoscopy next week and I am worried that I have few options left. I am told I have pancolitis that is moderate, but with nothing working I am concerned I have been misdiagnosed or there are other factors not being taken into account. I am wondering if anyone else has experienced this? If so, what are some of the options you were given? I have been told that I will either need to switch to Humira, or go on a higher dose of Remicade but am worried that nothing will work at all. Any advice is appreciated.  
Posted 7/27/2015 8:56 PM (GMT 0)
Many of us are in the same boat. In fact, your story is identical to mine except Ive been diagnosed and in a flare for 6 years. Odds are you are not misdiagnosed; your body, like mine, is just stubborn.

I agree with your current options but you can also increase the frequency of remicade. I would try to do everything you can with Remicade before ditching it.

You also have Entyvio and Simponi to try, so you still have options after Humira
Posted 7/27/2015 9:31 PM (GMT 0)
i agree with marauder. try increasing the dosage and frequency of remicade if you can because once that drug is out, it's out for good. obviously, if your scope looks like death, then i'd switch biologics all together since it's apparent remicade does nothing for you. you've been on it almost 6 months and that should've helped by now if it was going to.
Posted 7/27/2015 9:40 PM (GMT 0)
Thanks for your input! I believe after comparing my colonoscopies the first step is to increase Remicade (hopefully dose and frequency) before going on to another biologic. I didn’t realize I had that many options, I had really only been told about Remicade and Humira by my doctors.
Posted 7/27/2015 10:14 PM (GMT 0)
Try imuran or 6mp as they not only help improve UC they help prevent you from making antibodies against remicade
Posted 7/27/2015 10:28 PM (GMT 0)
I am having the same problem, only not as badly as you it seems. I have lower left sided UC and am in the bathroom twice, maybe three times daily.  I still have sigmoid pain despite being on Sulfasalazine for almost four months. Going on a gluten free SCD, Paleo type diet has helped me along with daily supplements(Fish oil, Tumeric, Brolemein and Glutamine) but I can't get past the abdominal pain. You might want to try the diet and supplements. It might help you get out of the worst of it.

Post Edited (DJB387) : 7/27/2015 4:32:26 PM (GMT-6)

Posted 7/28/2015 3:27 AM (GMT 0)

DJB387 said...
I am having the same problem, only not as badly as you it seems. I have lower left sided UC and am in the bathroom twice, maybe three times daily. I still have sigmoid pain despite being on Sulfasalazine for almost four months. Going on a gluten free SCD, Paleo type diet has helped me along with daily supplements(Fish oil, Tumeric, Brolemein and Glutamine) but I can't get past the abdominal pain. You might want to try the diet and supplements. It might help you get out of the worst of it.

Are you taking any rectal meds? Those are the best things you can take for left sided UC. They may not reach all the way up your descending colon, but they can help with the sigmoid and rectum for sure
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