July 14, 2006

Why a "mere blogger" knows more about new treatments that her doctor

It all comes down to time. I have it, my busy endocrinologist does not.

So I read weekly newsletters like "Diabetes in Control", I scan health news posted in online edition of the NYtimes and on the Google News site every day, and when I see something about a new diabetes treatment or drug, I check the newsgroups and bulletin boards to see what people who are using the drug have to say.

That's why I'd noticed, months before my endocrinologist did, that the people reporting the biggest weight loss successes with Byetta were those who had been having problems controlling their eating (a problem I don't have.)

When she suggested that I try Byetta 6 months ago, I'd pointed out that I don't eat very much and certainly didn't want to lose weight and that the people who were happiest with Byetta were those who were eating a lot less now that they were taking the drug. Just yesterday at my appointment, when I asked the endo how her patients were doing on Byetta, she said, "I'm finding it's working best for the people who had problems with overeating."

When Levemir came out in the U.S., I looked to see what people in the U.K. who had been using it for years had to say. I also read the prescribing information very carefully. As a result I knew that it was not the 24 hour basal that the manufacturers would like you to believe it is. And, for that matter, that neither is Lantus for people taking type 1 rather than type 2 sized doses!

When I was looking to improve my control last year and checked out Avandia, I read the prescribing information, and then posted online asking people about their experiences with it. I got an earful! Dozens of people reported that it had caused edema and weight gain. I read an article online about an eye doctor who gave a speech at a conference linking Avandia to macular edema almost a YEAR before that news finally made it to mainstream medical news organs. I gave it a try, but when I swelled up like a tic and started having daily headaches, I ditched it immediately, though my family doctor who had prescribed it insisted that his other patients who took it had no problem with edema!

Most recently, when I was looking at Amaryl I checked out the whole story behind the increased incidence of heart attacks in people taking sulonylurea drugs. This is cited in a bold print warning in the Amaryl prescribing information. When I mentioned this to my endocrinologist, she told me she was not aware that there was a link between sulfonylureas and increased heart attacks nor did she know about the warning in the Amaryl prescribing information.

These are just a few examples of how the educated patient, who has the time to study up on their condition may be way ahead of the busy doctor whose continuing education consists of occasional drug-company sponsored junkets.

Fortunately, I'm not alone in doing this. Scan alt.support.diabetes via Google Groups, or read http://www.diabetes-book.com/cgi-bin/yabb2/YaBB.pl and you'll find lots of other people with diabetes doing the same thing. That's because with diabetes, the consequences of settling for average care instead of the right care can be early death, lost limbs, dead kidneys, and blindness.

If busy professionals would have more respect for the experience and knowledge of educated patients, the rest of their patients would probably be better off!


Anonymous said...

great website jenny! thank you for all your help and diligence. i've bookmarked and check daily
keodmo from dr B's