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Humira/Remicade - Worth it at a 40-60% success rate?

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Crohn's Disease
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Posted 5/7/2009 12:19 AM (GMT 0)
Hello everybody,

I have had a fistula to the skin since January. Right now, I'm taking the triple antibiotic therapy (started a month and a half ago) but have had no signs of improvement, and just added flagyl to the mix last week. I've been told to give the antibiotics 3 months before considering another route...which would most likely be Humira, because they aren't comfortable doing infusions in my small island town hospital. However, I've heard and read that those types of drugs only have a 40-60% success rate for healing fistulas. For such expensive drugs with potential side effects, is it really worth it to try them? My doctor said that you don't want to keep cutting away at the bowels (had a resection in October), just have them fistulize over and over again...so I guess you just have to take the drugs forever? It sort of seems like I have no other options than to take these drugs, even though I really don't want to. Anybody agree/disagree...or have any recommendations?

On a side note: I am so very frustrated about the difficulty of applying/qualifying for Medicaid/Disability for Crohnies :(
Posted 5/7/2009 2:04 AM (GMT 0)
Is this triple antibiotic therapy the MAP therapy?
Posted 5/7/2009 2:29 AM (GMT 0)
Yes, the anit-MAP treatment, as recommended by Dr. William Chamberlin.
Posted 5/7/2009 2:40 AM (GMT 0)
Daisy, I think that the doctors are trying to save your innards for as long as they possibly can. We do have a few people here who have lost most of their intestines to surgery, and they can end up with a whole set off problems generally not experienced by the rest of us. It's not a good situation to be in, and I suspect the doctors are trying to keep you as intact as possible for as long as possible, especially as you're only 22, and have a long life - and probably many relapses and therapies and surgeries - ahead of you.
Posted 5/7/2009 5:15 AM (GMT 0)
Have you taken Imuran or 6MP yet? Both of them helped my fistulas, although that was the only good thing they did for me.

I'm on Humira now. It's helped my Crohn's a lot, but unfortunately, it did little for my fistulas. It was only when I changed my diet that they finally closed up and healed.
Posted 5/7/2009 6:28 PM (GMT 0)
My husband didn't have a fistula, but had some very very severe inflammation, that didn't respond to even 120 mgs of solumedrol. Remicade definitely saved my husband from surgery. It was completely worth it for us to try remicade.
Posted 5/7/2009 7:02 PM (GMT 0)
I haven't tried any medications aside from what I'm taking now and Asacol....I'm hesitant about the more serious drugs. One doctor had told me there were side effects of blood diseases, like leukemia, while taking Humira/Remicade...Has anybody had any bad experiences on these drugs? Is it really any less of a risk than surgery?

Also, I've heard about a CT scan that will show fistulas in the small bowels better than a small bowel follow through, but I don't think they do that at my hospital...anybody heard of this?
Posted 5/10/2009 7:03 AM (GMT 0)
Spookyhurst, how did you change your diet? I have a fistula from hell that will not close. On 6mp and Humira....
Posted 5/10/2009 12:19 PM (GMT 0)
I have been on Remicade since August of 08 and just had a new fistula drained last Thursday. I have a drainage tube sticking out of my belly as we speak. Whats up with that? Remicade has helped with my arthritis but appearently very little for the crohn's.
Posted 5/11/2009 5:44 AM (GMT 0)

tiamarie said...
Spookyhurst, how did you change your diet? I have a fistula from hell that will not close. On 6mp and Humira....

I started eating the Specific Carbohydrate Diet. The first month they healed quite a bit, but then flared back up a little in the third month after a bout of severe constipation. After that, they healed very quickly and have remained gone. I had another bout of constipation a week ago, and they didn't reappear (can't say the same for my hemmies mad). I have a colonoscopy on Tuesday, so hopefully that will show that they're healed on the inside as well.

I'm not sure exactly why SCD helped, but I suspect that it might be a bacteria issue. If bad bacteria were keeping the fistulas open, then maybe enough of them got killed off (due to starvation) to allow the fistulas to heal. And/or maybe the good bacteria from the yogurt played a role. Regardless, it's made me very happy!
Posted 5/11/2009 12:35 PM (GMT 0)
Craizy_daizy, are you opposed to trying the SCD?
Posted 5/11/2009 5:19 PM (GMT 0)
I think I'm going to read up on it today.
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