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Re: Email reply from SJS Foundation interesting Phil

Posted by Sulpicia on May 14, 2002, at 2:48:47

In reply to Re: Email reply from SJS Foundation interesting, posted by Phil on May 12, 2002, at 17:19:16

Hi Phil--
stuff like this can be scary, and hard to sort out.
since i can't comment on the U Toronto stats w/out the
article to hand, i'll stick to the JAMA article.

first read the critique of the metanalysis that generated
the numbers. second, think about the 25 year time period:
in the last several decades the pharm industry has created
some extremely potent drugs -- like cytotoxics, antivirals,
3rd and 4th generation antibiotics, and protease inhibitors.
yes, there are risks in taking these drugs, but people with cancer
AIDS, group-B strep and the like will probably prefer these risks
to death from disease.

i notice that the authors don't distinguish between voluntary and
involuntary removal. there are some effective drugs that the manufacturers
have simply pulled off the market cuz they're sick legal exposure.
last year statins got a ton of bad press from patients who developed
rhabdomyolysis, a potentially lethal muscle tissue breakdown. it turns out
that many of these patients were also prescribed gemfibrozil [sp?],
which docs were *clearly* warned not to do. there were 2 or 3 FDA MedWatch
warnings about this until finally the 2 meds stopped being prescribed together.

when ibuprofen was first released, docs tended to prescribe higher doses to elderly
patients and there were cases of liver damage.

another piece of this is *social* for want of a better word. in the mid 70's to early
80s, patient groups started to advocate for speedier access to drugs in the FDA pipeline.
the fact that effective cancer drugs were no longer a fantasy combined with the frustration
of people with HIV.

is the system perfect? no, of course not.
and i think direct advertising of prescription drugs to consumers is indefensible.

Lamictal: my daughter takes it, and would be dead if she didn't.
we've been thru *rash* scares, and even a re-start. during those tense days and weeks,
i managed to read pretty much all the professional literature, so i offer the following
to take or trash as you see fit:
start low [12.5mgs] and go slow
avoid sun exposure
avoid herbals and dietary supplements and echinacia
[cuz SJS is an allergic reaction], and try to limit your
exposure to new allergens
go to the Glaxo home page and download the professional prescribing
consider lamictal as an adjunct to polypharmacy if risk is going to keep you tense,
tho preferably not with depakote, which seems to be associated with increased risk of
go the the Johns Hopkins dermatology site [dermnet, i *believe*] and search for
"erythema multiforme" to get good pictures of the early rash.

always have a rash checked out, and keep in mind that the most qualified person to pick
early SJS is a neurologist w/an epilepsy practice, then an experienced pdoc or dermatologist.

the risk is higher in kids, as they take relatively large doses for epilepsy, and remember that
only a tiny fraction of rashes progress to SJS, and an even tinier percent of these progress to

what i was surprised to learn is that the most frequent cause of SJS is antibiotics, something we
seem to take at the drop of a hat.

i do sympathize with you -- some of these web sites are terrifying. and even bona fide numbers
can be shocking. i still remember the first time i read the full package insert for oral contraceptives --

educate yourself and talk to your clinician.

be well,




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