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Next step: Humira

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Crohn's Disease
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Posted 1/9/2016 5:30 PM (GMT 0)
Hi everyone. I appreciate folks responding to my previous recent posts regarding my 6mp fears and then my post about "failing" the 6mp test due to lack of proper enzymes to metabolize it. Met with the GI yesterday and he feels like I am a good candidate for Humira. Honestly, when I saw the scope images of my terminal ileum at probably the peak of my flare from mid November I was convinced that I probably need a stronger drug (at least stronger than Pentasa). Also explains the massive pain I was in! Norco was the only thing that cut the pain and just felt terrible. Things are under control now with Entocort and a course of flagyl but that is not a long term solution for me. The opening to my TI was so small and he educated me about obstructions, strictures, fistula and how much worse that would be. So now he is applying for Humira through my insurance and I will have chest X-ray, hepatitis test, ect. My insurance plan is considered a platinum plan in the US (high premium, low deductible). He even gave me the starter kit and a copay coupon from Abbott. He consulted with 3 other GIs about my case (all who specialize in GI diseases) and I really feel like I am in good hands and that this next step is the best for me. I have no problems self injecting. I also suffer from hydradenitis supparativa and Humira has been shown to help with that. Really the Hydradenitis has been the worst for me most of my life (since age 12) but "only" have active disease in my groin and butt cheeks. To think that I would not have any more painful boils would be a Godsend!

Just wanted to know anyone's experience with Humira. I have read many success stories but I also recognize the risks. Anything you would like to share is appreciated. I really think you guys are a great resource, particularly for crohnies like me who really have not had a lot of complications since diagnosis.

TIA!
Posted 1/9/2016 7:12 PM (GMT 0)
I've been on Humira since 2008. I started it after a nasty flare that landed me in the hospital, the inflammation going on in my small bowel was actually causing problems with my liver. I started to feel better almost immediately after starting the Humira, within several months I felt better than I had in a couple years. It worked great for 2 years then I started to have symptoms again, although there was only a small amount of inflammation and ulceration during my colonoscopy in 2010. By 2012 things had really gone down hill and my GI increased the dose of Humira and I ended up being on Entocort 4 times between the end of 2012 and the beginning of 2014 when I had a resection. I should add that I've never made it more than a couple of years in remission on any medication, I started Remicade 2 weeks after I was initially diagnosed and used that with 6mp and still had small flares. Hopefully, the Humira will work longer for you than it did for me. I am certain that it definitely delayed my bowel resection.
Posted 1/10/2016 1:47 AM (GMT 0)
I forgot to say that I've never had any problems with infections or reactions while on Humira. I do wash my hands probably more than a normally healthy person but I also have two small kids so better safe than sorry.
Posted 1/10/2016 1:55 AM (GMT 0)
I'm sure that moving onto Humira is a good decision. You should see very good results. Studies in the last several years have shown that you can negate the formation of anti-bodies if you use anti-TNF's along with another immunosuppressant. Imuran or 6mp are the most common, but you could also use methotrexate. You would need a more moderate dosage than if you were solely on an immuno. You should really discuss this with your GI of course.
Posted 1/12/2016 1:06 AM (GMT 0)
Thank you both for sharing your experience. I am hoping everything goes well with insurance and the pretesting. How long does this all take before I receive my first dose? That's probably a silly question but I am beginning to worry I will get sick again before I even start. I am tapered down to 3mg Entocort and I can feel pain coming back. I am supposed to go off Entocort early February. Hmmmmm....maybe I am just anxious about all of this.
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