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Lucky Me---Humira and 6mp (posted this in more than one place, really need support)

Lucky me!!! Scared to try either of these, I'll be joining both clubs.

I saw a doctor at the Mayo Clinic in Rochester, MN and he wants me to go on Humira and 6mp. He said that studies show the best results for inducing and maintaining remission with combination therapy. I stopped my most recent course of pred on July 7, had mouth sores, including my corner buddies (sores on the corners of my mouth) the first week off, and everything else came back in waves. Joint pain, nausea, crohns pain, eye issues, etc. And of course, the ever-persevering corner mouth sores.

I told him I had blood last week but assumed maybe it was just a mild fissure or something as there wasn't much, and some of it even appeared when I was only peeing (positive it was dripping from the rear end, that is where it appeared when wiping). So he checked my anal region and said I actually have a really healthy anal region, no sign of fissures or anything else that would be causing bleeding, so if there is bleeding it is internal. Then I had it again this morning. WTF. I'd like to insert a frustrated confused smiley face....can't find the right one to encompass the emotion of WTF.

I have to make the 4+ hour drive back tomorrow for some imaging tests. The tests they ran yesterday were mostly to make sure I could start either of the drugs. But they also want to make sure they aren't missing anything. They requested my records from my 5/31/12 colonoscopy and EGD from which my old GI was non-plussed (only mild inflammation, hiatal hernia and slight esophageal structuring). He said unless there was something questionable there, he did not feel the need to repeat the scoping and just do the imaging.

I feel like someone is finally helping me. But I am at work and I just want to cry. No one understands how horrible I feel. Just fatigued up the wazoo, nauseous to bits and all around miserable. Oh, and have pooped blood twice in the last hour.

I did call the Mayo doctor's nurse and let her know that he examined the anus area yesterday and said he couldn't see anything to account for bleeding and if I was having it it would have to be internal....and that lo-and-behold I am having it yet today. This way, if he is going to want to run any additional testing or scoping, they can hopefully arrange it for same day (tomorrow) since I can't afford to miss any more work without them putting me on disability (I can't even afford the reduced pay of disability) not to mention the 9 hours of driving I'll be doing to get there and back.

Words of encouragement, please? I'm scared to death of Humira and 6mp, but will do it because I just can't live like this anymore. But if you have any words of advice, wisdom, or things you experienced with either or both drugs, I could really use it. Thanks for anything and even just for reading.


I just can't help but feel isolated right now. The only thing that helps is this forum and knowing you guys are out there with your own versions of this boo-cocky.
 
So sorry That'swhatshesaid :hug: This disease just sucks. No way to sugar coat it. The medications do too :thumbdown: I understand completeky why you are scared of the combination. That combined with the news that the CD just can't be controlled without Prednisone, just makes it worse.

I haven't been on the combination but I know of a few people who have and all have said that they were glad they did the combo and wish they did it sooner. Some people just need combination therapy to get their disease under control and if that's what it takes then it is worth looking into. The risks of undertreated Crohn's Disease is scary and painful too so that is something to consider as well.

Humira was the only thing that gave me some sort of relief other than Prednisone. I kind of wish my doctors would have added the 6MP instead of waiting till after the scopes-by then it was too late.

Like you said, you can't continue living this way. It sounds like you know that you need it but you're scared and that is understandable. Hugs and I'm sending prayers your way! :hang:
 
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