Well, this isn’t good.

I’ve got severe cramping pain, bad gas, and nausea–the usual beginnings of a flare.  I was JUST getting over the last one.  There’s no diarrhea or bleeding so far, but it won’t surprise me if that starts soon too.

I’m going to try to wait until tomorrow and see if it lets up.  If not, I’ll call my GI doc and see what he wants me to do.  I really don’t want to go back to the ER.  I was there between Thanksgiving and Christmas, and they were nice but clueless about treating UC.  They gave me fluids, Zofran, and morphine, tested me for C. diff., and sent me home.  That’s not going to make any real difference.

Problem is I’m kinda running out of treatment options.  The only thing I haven’t tried yet is Remicade (infliximab).  My GI doc has previously mentioned the possibility of upping my Humira from once every two weeks to once a week, but I don’t think my insurance will pay for that.  I’m not sure how difficult it would be to get them to approve Remicade, either.  I know a lot of people have a lot of trouble getting insurance to pay for it because it’s so expensive.

There’s another biologic drug that’s on the FDA’s hot list for quick approval, possibly as soon as May 2014, vedolizumab.  From everything I’ve read, it sounds a lot like a miracle drug for UC–not a cure, but a better treatment option.  It’s similar to Humira and Remicade in that they’re all monoclonal antibodies, but it works only in the gut and consequently has fewer scary side effects than the biologics currently on the market.  (You know, stuff like leukemia, lymphoma, and death.)  I’ve looked for clinical trials in the hope of getting it before the FDA approves it, but there aren’t any in my area.

I’m just so tired of constantly being sick.  I get a few weeks of okayness, and then BOOM!  FLARE TIME!  This isn’t working for me.



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5 responses to “Well, this isn’t good.

  1. kat

    i dont know how you do it. you must be very strong. good luck on getting the new med.

    • Oh, I don’t always do it particularly gracefully. I’ve had a number of sobbing meltdowns since my diagnosis. But you don’t really have much choice about dealing with whatever life throws at you. I do okay with it emotionally most of the time, but I’m just so worn out by all of this tonight.

  2. I was on Canasta and another I can’t remember the name of recently, but my case was mild as I caught it early. When I was younger I was on sulfasalazine and some type of steriods, but I hear they don’t use sulfas anymore. Good luck and I signed your petition too.

    • Yeah, I was on Canasa the first time I was in the hospital, but then my insurance company refused to pay for it OP. My doctor switched me to Rowasa, which insurance does cover. I’m also on Lialda, which is the same drug in an extended-release pill form. (Plus Humira, 6-MP, Entocort, Nystatin, and probiotics.) My doctor would prefer to have me on prednisone instead of Entocort, but prednisone makes me psychotic and suicidal. It also makes me turn fuchsia, but that’s not a major concern. 😉

      • Wow, through the ringer… Good luck and I’ll be thinking positive thoughts for healing and something that works. Looking fushia might be cool, but only if it was the lighter violet version.

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