I have tried Humira -- and it never got into my bloodstream so the doctor discontinued it. A couple years later I tried Remicade - and they say there were antibodies and the medication never got into my bloodstream either. Now, the doctor suggests I try Entyvio. He also prescribed Cholesteramine, which I haven't really started yet.
Any suggestions or am I just wasting time with all this?
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Finding an effective treatment can be time consuming, disheartening, and exhausting. It is not, however, a waste of time. A failure of one treatment rarely implies that a different treatment will also fail. Patience with your body will likely get you to the best outcome. You are worth the effort.
Thanks for the reply Scott. I haven't met too many people who had a one-step total colectomy like me. I would like to hear more about your 2002 surgery.
The surgeon offered me one- or two-step J-pouch options. He warned me that my time in the hospital would probably be about the same with either approach. I chose a single stage procedure because I was flying in from out of town. I did have an uncomfortable, ten-day hospitalization, but went back to work in about six weeks. I was lucky that I had close family in the area, and I stayed there for an extended visit during my post-hospital recovery. As for the procedure itself, I slept through it. I’m told that it was completed astonishingly quickly. I’ve been very happy with the result, in spite of developing chronic (antibiotic-dependent) pouchitis around 2008/2009. I’m up to two antibiotics, and if those fail I’ll probably have to start trying biologics.
I've been on it. We did a check after I had been on it a good while, and just before my every 8 week IV, and there wasn't much in my blood stream. The doc upped it to every 6 week. He did another check after I had to get iron again, and there wasn't much in my blood stream. I told him let's just call it with all this stuff. I did the Remidcade and the Humira once a week, and let's just call it. He talked me into doubling the Entyvio to 600 mg. every 8 weeks since it is supposed to be a 8 week medicine. My feritine is currently at 8.1, and here I go again for IV's of iron, but I have only had one IV of the new amount, and that was on January 23rd. I asked him before we started about where do we draw the line as to if this works or doesn't work. He said 4 IV's or 8 months. So, i'll either skip it all or go on the Stelara, which I believe is self administered injections like the Humira, but only every 12 weeks.
My son went that route as well and ended up on Entyvio. It's working for him. Good luck!!
