by jenndola (1851 Posts), Sun Aug 29, 2004 09:19 pm
Sorry it took so long to report on the peri visit. My work schedule has been rotten this week, and I've been exhausted! And I'm also going to apologize in advance for what's sure to be a long post.
The worry over the peri was pretty much senseless...unless you count the part where he called my pregnancy history an "awful mess"![:0] I love this doctor, because he doesn't candy-coat anything. He can call me an awful mess, because he's been there for all of it and he knows exactly what he's saying. For those of you who don't know, I have very well-defined Antiphospholipid Syndrome (diagnosed due to a blood clot in my brain before I ever even tried to get pregnant). So here's what we've got:
I'll stay on the plaquenil (an anti-malarial that works as a slight immunosupressant) during pregnancy. Initially there was some concern about risk of birth defects, but time has shown that doesn't seem to be the case.
I'll start on heparin preconception, to avoid using Coumadin past the 6th week on the off chance that I didn't know I was pregnant. He actually said he'd prefer to use standard heparin and not Lovenox, which I'm completely fine with since my prescription coverage is so lousy.
Then the kicker, and the biggest reason he wanted to talk to me. He actually told me I probably shouldn't discuss this with people, because they'd think I was nuts and my doctor was nuts, because none of this was proven, but since I've already talked about Enbrel several times...whoops! Anyway, he wants to start me on Enbrel or another TNF (tumor necrosis factor) inhibitor as soon as we see an embryo. He wasn't willing to actually say he wanted to do it, or even that he strongly suggested it, because there's no real evidence that it will work. There's solid theory, and a mouse model that a group of researchers are working on. But the science looks really good, and even though he wasn't willing to try to influence my decision, I could tell he's encouraged by the research.
I really want to emphasize that the only reason my peri wants to try this is because I've failed traditional APS therapies. If anyone with APS in this forum went to her doctor and said, "So this woman is on Enbrel..." they'd probably tell you my doctor is a quack. But he isn't. We're just turning to experimental therapies because we don't know what else to do.
My husband and I have discussed it, and we're going to go ahead and try it. But not until November, because that's when I'll have my better pharmacy insurance (Enbrel is over $600 a month if you're paying out-of-pocket).
So we're counting down the days until November, and praying for an experimental little miracle when the time comes. Wish us luck!
Missed miscarriage/D&C 14 weeks
Angel Maggie stillborn due to HELLP Syndrome & PIH at 19.5 wks
Miscarriage 6 weeks
Antiphospholipid Syndrome (APS)
I'm putting my perinatologist's kids through college!