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Ulcerative Colitis
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Posted 10/9/2015 9:40 AM (GMT -8)
Hi-
I was on 7 shots of Humira, and on Butyrate enemas, and seemed to start a remission, then a trip to Australia to visit my son and his family-
27 hours of traveling- seems to have put me in a bad flare!!
Has anyone else tried butyrate enemas? Seems I can't retain them now for some reason.
Had the Prometheus test for Humira- showed that I haven't had the therapeutic level yet, but showed I was developing some antibodies against it.
I am so depressed and don't know where to go from here?
Would really love some advice.....
Posted 10/9/2015 9:47 AM (GMT -8)
Humira is great becasue it's convenient but remicade has a higher success rate for UC. If you saw some success with Humira but not enough, i think I would see about switching to Remicade.

I could never retain enemas when I was flaring. it's tough. You could try taking bentyl or using half the enema instead of the whole thing.
Posted 10/9/2015 9:58 AM (GMT -8)
Thanks for your quick response. I tried
Remicade- had to be admitted to the hospital after one infusion, gave me tachicardia.
Posted 10/9/2015 10:50 AM (GMT -8)
It could just be traveler's diarrhea or food poisoning (aka salmonella). How long has it been going on? We can get sick with those, like anyone can but they do clear up in a week or so.

Have you had a stool test to check for cdiff? It acts like a uc flare and clears up with antibiotics.

Just because you're seeing antibodies to humira doesn't mean you have to abandon it. Frequency can be increased to reach therapeutic levels and negate antibodies.

Other biologics are simponi and entvyio.
Posted 10/9/2015 10:54 AM (GMT -8)
Do you take probiotics? You need a very high powered one with probably at least 100 billion CFU's, such as VSL#3.
Posted 10/9/2015 2:01 PM (GMT -8)
Hi
I don't have diarrhea , just having blood in the toilet , no stool.
Just spoke to my Dr, he said my Prometheus test showed that I am not at therapeutic levels of Humira, but am building anti- bodies against it. I really don't understand what that means!!!! If I am building anti- bodies against it- how can taking more of it make me not build antibodies against it. Doesn't that mean it will never work?
Posted 10/9/2015 3:04 PM (GMT -8)
Therapeutic level: You generally want a medication to reach therapeutic levels within your body, that's the ideal concentration in which the most healing takes place. If you're not in therapeutic levels then it's particularly working but could be more effective, if dosage is increased.

Antibodies: First, let's talk about what Humira is. Humira is a biologically engineered protein that's designed to adhere to a protein that your immune system uses to say "send an attack over here" known as TNF-Alpha. Once the two proteins bind, they both pass harmlessly out of the body, and inflammation is avoided in that one instance. Your immune system develops antibody proteins to anything it conceives to be a threat within your bloodstream. When present, an antibody protein binds with one humira particle, both pass out of the body without humira working. Antibody concentration is a bigger concern, if there's only a small amount of antibodies then it can be countered by flooding your body with more humira. If there's more humira then antibodies then humira still works. Reverse that scenario (more antibodies than humira) and you're screwed, time to try another medication.
Posted 10/9/2015 7:46 PM (GMT -8)
Thanks for your answer! I have been crying all day- wondering what will become of me with this disease! I have one shot left- which I will take on Sunday- then I will speak to my Dr. And ask if I should go on shots weekly to see if my antibody level decreases. Since I just turned 65, and am on Medicare, I am charged 1300.00 for six shots. It is worth it for me to try taking the next six shots weekly- to see if they help. The Dr. wants me to try Entyvio, which is outrageously expensive!i have had UC for eleven years- it started as Ulcerative proctitus- and has spread 18 inches. I will never have the surgery- I just pray that I will respond to something!!!
Posted 10/9/2015 10:14 PM (GMT -8)
The antibodies will not get lower, and might even increase. The idea was that you can keep more Humira than antibodies, you have some chance.

Possibly you can take Imuran or some other immune suppressant to slow down antibody formation.

If you get too many antibodies you will need to try another drug. It does suck that they are so expensive.
Posted 10/10/2015 2:04 AM (GMT -8)
Ditto what DBwithUC said, antibody levels don't decrease, but your humira level can be increased to counter it.

Ask about increasing your humira shots. Ask about simponi (it's a shot just like humira is). I'd do some phone calls to your insurance and ask about simponi costs and entvyio costs.

There are patient assistance programs for all of these medications, to help with copay costs. I'm not sure if that works with Medicare or not.

Humira www.myhumira.com/InsuranceHelp/FAQ.aspx

Simponi
www.simponi.com/sites/default/files/pdf/simponione-cost-support.pdf
/www.simponi.com/ulcerative-colitis/support

Entyvio /www.entyvio.com/hub/
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