You come to the computer, filled with deep thoughts about medical controversies and medical discrepancies and differing opinions. And then you stare at the screen for a while and finally decide to type in what you read from Preventing Miscarriage.
First off, though I had initially been a little put-off with the opening of the book (it had a tinge of manic cheerleader: you can have a baby, you will have a baby, go team!), perhaps because I don't like people to make promises that they can't keep to all readers. But I grew to love this book when the river of information began flowing. Mostly because reproductive technology changes minute by minute and even books written two years ago seem outdated in light of new discoveries.
The only drawback with this book is that the "interview" stories comes from his patient base. And all but one person interviewed was ultimately successful in carrying to term. Therefore, take their glowing reviews of the author with a grain of salt. Then again, since the author practices in New York and seems to have many tricks up his sleeve, he may be someone who you'd want to schedule a consult with if you have recurrent loss or recurrent unsuccessful IVF cycles.
When I broached the topic of clotting and immunology disorders with my OB, I had no idea about this can of worms. I was confused by his reaction, but after hearing your stories and reading a few books, I'm beginning to understand that there are whole layers of in-fighting (sometimes connected to off-label use) within the medical community. Sort of like the Sharks and the Jets. And like the Sharks and the Jets, anyone who cavorts with a member of the opposite side is in danger of...a sound rejection and mocking (which doesn't sound dangerous, perhaps, but try having someone mock you when you are strung out on hormones and grasping at anything that is going to get you--and keep you--knocked up. Not a pretty picture).
This is from the book: "IVIG has been used by doctors for over 28 years to treat autoimmune diseases such as multiple sclerosis, but it is new in the treatment of miscarriage and IVF failure. This is an 'off-label' use for the drug--a new use for an already approved drug...(p. 187)"
Which is what made me pause. I had thought that IVIG was a new treatment--and it's not. It's an off-label use. And more on the politics of this in a moment.
One of his patients stated this: "I admire the doctors who are prepared to stand up for the immunology treatment. If no one was prepared to fight the conservative ways of medicine, we'd never get any changes accepted. It seems to me that it's become quite a political issue. Some doctors refuse to treat women immunologically, even after several failed IVFs. So the women have to go secretly to get the treatment. I've heard doctors say IVIG is like witchcraft. One screamed at his patient and told her to get out of his office, then he slammed the door behind her. But women talk to each other or search on related Internet sites."
Not being a doctor, I don't really understand the controversy that surrounds off-label use of accepted treatments. And what goes into establishing a drug's usage in the first place. I can understand doctors rejecting non-approved medications--especially if taken in conjunction with treatment prescribed by your doctor (though, with a situation like Domperidone, which is approved in other countries, I'm betting that some of the decision-making comes from pressure from the drug industry lobbyists). With doctors, I understand the desire to have control over a situation you are being asked to control.
But I've seen this before when the lactation consultant recommended Reglan (don't do it, don't do it) in order to increase milk production (instead of doing something like...oh, I don't know...checking my prolactin levels and making sure that I still produce prolactin and it wasn't wiped out by...oh...fertility treatments or something). Reglan is actually a reflux medication, but it has the added benefit of increasing milk production (if you produce a normal amount of prolactin in the first place). An extra use, let's say, to an already established medication. The OB waved the whole thing away at first, but later gave in with a "if it's what you want to do" (can we note, for a moment, the fact that he too didn't offer to run some simple blood work when I told him that my milk still hadn't arrived after three weeks? It wasn't until months later that I saw the endocrinologist when my new OB sent me).
And perhaps it's just my perspective, but the controversies over off-label use seem to pop up quite often when it comes to women's reproductive health. Which goes hand-in-hand with the lack of desire to be agressive and treat a problem. Or search for the root. Again, my experience is limited to matters of women's reproductive health. But I would love a study done that looks at off-label usage of medications and see how quickly they're established as commonplace, accepted treatments when they're outside vs. inside women's reproductive health.