I asked her about
the biologicals, and we settled on trying Humira just because I would be able to avoid having to go somewhere for infusions (I would have to use one of my employer's facilities instead of her office or it would cost me huge and I'd rather not be seen there). Although she said her observation, confirmed by her GI colleague at Mayo who have a much greater volume of patients, is that Remicade works a little better.
She explained that Remicade is made with mouse stuff, while Humira is made with human stuff... you probably know all that. She only had one patient react very badly to Remicade, many years ago. She said if I am allergic, I'll be able to tell right away, and she said her patients can usually also tell right away if it is having any effect. She said some side effects once identified (like itching) can be dealt with preemptively. We also covered the more serious stuff, TB, infections, lymph cancer, but I am not going to expect any of that, I'm not at risk from any family history.
I'm very hopeful! The insurance situation is being checked out, so I might not know until next week if the Humira will be the way we go. It's a "special Rx" which means it isn't subject to the usual co-pays...but it seems like it is covered even though not yet FDA approved for UC. So we'll see.
She says about
60-70 percent of her patients have good results on the biologicals.
She also said I would probably do well with surgery, I am good and healthy otherwise, and we even strategized about
how I could sneak it in without anyone knowing! Should this not work and I decide to do it. I doubt I would, but who knows.
I like my doc, she thinks like me in that she says she, too, would not tell anyone if she had UC. We laugh, it's so undignified! She noted that I don't complain about
it, just suffer privately (believe it or not). She observes that patients who think everyone should know they have it find it usually backfires on them, as far as success in life.
Thanks for asking, it helped to write it all out. More to come!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares.