I started Humira last September and had a slow but positive response to it, finally hitting something close to remission in January. Then my symptoms spiked back up and stayed up. It's called secondary loss of response. My regular gastroenterologist kind of threw up his hands and referred me to a doctor at NYU Langone Medical Center in NYC who does nothing but treat IBD patients. The new doc is fabulous - he spent 40 minutes with me, had already looked over the notes from my other doc, took a very detailed medical history and answered a lot of questions I had about
the different biologics that are available for UC. He even takes my insurance, so the whole thing just cost me my $35 copay. A lot of really high end specialists in NYC don't take insurance at all. NYU Medical Center is beautiful, in a nice neighborhood, and an easy walk from Grand Central. Here's his info if anyone in the area is looking for a new doc or a second opinion.
nyulangone.org/doctors/1538326970/david-p-hudesmanHe took blood to test my Humira blood levels and to see if I had developed Humira antibodies. He also ordered a stool test for c diff. It turned out that my blood levels were low - 5.6 ug/ml, about
half what he likes to see. I had no antibodies and c diff was negative, so he increased my dose from biweekly to weekly. He told me that if I didn't respond to the higher dose in a month or so he'd put me on Entyvio. After two week on the higher does my symptoms are way down - 2-3 BM's per day, with way less urgency. I am really optimistic that this is going to put me solidly in remission, at least for a while.
So I thought I'd share a few things I've learned from the new doc, who has a lot of published research on IBD and the biologics. He's not crazy about
Humira because it's injected subcutaneously. Some people don't absorb SC injections all that well, and it limits you to a small dose. They can also takes days to be absorbed. An infused med like Remicade goes right into the bloodstream and can be much bigger, so it has better odds of being successful if your disease is TNF mediated. I got curious about
this so did some digging and found this:
/www.ncbi.nlm.nih.gov/pmc/articles/PMC4437804/This is from the section headed
PHARMACOKINETICS OF ANTI-TNF ANTIBODIES
Absorption and Clearance
Understanding pharmacokinetic principles of anti-TNF agents are essential for optimal dosing and efficacy. Pharmacokinetics varies between anti-TNFs based on drug makeup, route of administration, degradation, and elimination. IFX is infused intravenously, which allows a large bolus of drug to enter the system at once through the venous blood, followed by direct diffusion into the tissue resulting in a high peak concentration immediately after the infusion, which tends to be reproducible between individuals.12–14
ADA, CTP, and GOL are injected subcutaneously (SC), which tends to have a more variable absorption, likely related to lymphatic absorption of drug before reaching the venous system.12 Thus, drugs administered SC take longer to reach the systemic circulation, with peak drug concentrations not occurring until up to 10 days after injection. The bioavailability of SC administration also varies greatly, ranging from 50% to 100%.
So the moral of the story is that a lot of people may do much better with an infused med or Humira at the higher dose.
And here's the tip for less painful injections. When I first started doing the shots I was pinching up the skin too hard, trying to get it way up from the underlying muscle. The stretches and tightens the skin. I found that a gentle pinch, leaving the skin in between my fingers relaxed is much less painful. The skin doesn't have to come up that far to do the shot successfully. It's a very short needle that emerges from the auto-injector.
My regular GI is a very good doctor, but if you have the opportunity to see someone who just treats IBD it can really be worth it. And if I have to go to a med that requires infusion I'm okay with that, but I'm really doing well on Humira now that the dose is correct.
Post Edited (Richard in NY) : 4/9/2017 2:53:39 PM (GMT-6)