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

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craizy_daizy
Regular Member


Date Joined Feb 2009
Total Posts : 50
   Posted 5/6/2009 5:19 PM (GMT -7)   
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 :(
craizy_daizy

-22 y/o alaskan
-resection oct '08
-diagnosed nov '08
-currently on levaquin, clarithromycin, & rifampin


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 5/6/2009 7:04 PM (GMT -7)   
Is this triple antibiotic therapy the MAP therapy?
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 12.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


craizy_daizy
Regular Member


Date Joined Feb 2009
Total Posts : 50
   Posted 5/6/2009 7:29 PM (GMT -7)   
Yes, the anit-MAP treatment, as recommended by Dr. William Chamberlin.
craizy_daizy

-22 y/o alaskan
-resection oct '08
-diagnosed nov '08
-currently on levaquin, clarithromycin, & rifampin


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/6/2009 7:40 PM (GMT -7)   
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.
Co-Moderator Crohn's Forum.

New meds thread


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 5/6/2009 10:15 PM (GMT -7)   
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.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/7/2009 11:28 AM (GMT -7)   
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.
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, and in crohn's remission, knock on wood


craizy_daizy
Regular Member


Date Joined Feb 2009
Total Posts : 50
   Posted 5/7/2009 12:02 PM (GMT -7)   
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?
craizy_daizy

-22 y/o alaskan
-resection oct '08
-diagnosed nov '08
-currently on levaquin, clarithromycin, & rifampin


tiaeight
Regular Member


Date Joined Sep 2006
Total Posts : 237
   Posted 5/10/2009 12:03 AM (GMT -7)   
Spookyhurst, how did you change your diet? I have a fistula from hell that will not close. On 6mp and Humira....

yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 5/10/2009 5:19 AM (GMT -7)   
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.
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 8 months ago. Now on Remicade, B-12 injections and iron. Feeling much better!
God Bless. Tony


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 5/10/2009 10:44 PM (GMT -7)   
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!
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 5/11/2009 5:35 AM (GMT -7)   
Craizy_daizy, are you opposed to trying the SCD?

craizy_daizy
Regular Member


Date Joined Feb 2009
Total Posts : 50
   Posted 5/11/2009 10:19 AM (GMT -7)   
I think I'm going to read up on it today.
craizy_daizy

-22 y/o alaskan
-resection oct '08
-diagnosed nov '08
-currently on levaquin, clarithromycin, & rifampin

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