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Tasmar- Enough Already!                  14 December 1998

In June 1998, midway in the 5th year of my diagnosis of PD, I
was comfortable taking about 800mg/day of levodopa (Sinemet)
and 10mg/day of selegiline (Eldepryl). Taking the Sinemet (part
regular and part CR) every 3 hours was troublesome, so I began
taking tolcapone (Tasmar) 100mg 4 times a day. Like the vast
majority of 60,000 other users, I was delighted. Only one sleep
interruption per night, less peak-dose and end-of dose
fluctuation, and Sinemet intake cut by half to 400mg/day.
Greatest thing since sliced bread.

Then, after 5 months, I got a notice from Kaiser that if I
wished to continue Tasmar I must have a monthly blood test
for elevated alanine aminotransferase (ALT), a sensitive
indicator of progressive liver disease. This followed the news
that 3 (maybe 4 now) of the 60,000 Tasmar users had died from
fulminant hepatitis (acute liver failure), and a series of
progressively stricter warnings and regulations by authorities.
I did continue, while trying to learn more, but in the face of
increasingly bad news, very reluctantly decided to quit Tasmar.
Now I'm back to 800mg/day of Sinemet, disappointed and unhappy.

With insatiable curiosity I continued my study (much of which
has been posted here) and got permission from my neuro to keep
up the ALT tests (now required biweekly instead of monthly for
Tasmar users). My tentative answers to two basic questions:

Q: Was Tasmar really to blame for the reported deaths?
A: The evidence is only circumstantial. More positive proof is
   unlikely, because volunteers for a controlled trial will be
   hard to find. One factor in my own decision to quit is that
   my age (76) probably disqualifies me for a liver transplant,
   if it should be needed.

Q: Does the required periodic ALT test give adequate warning?
A: Maybe. Some patients have been rescued by liver transplant,
   even after onset of fulminant symptoms. In the limited
   experience available, there seems to be an incubation period
   from zero up to several months, during which elevated ALT
   may, or may not, occur.

I'm now assembling my notes on fulminant hepatitis (acute liver
failure) which hopefully will end this chore, but since they
will be long and of limited interest, I'll reserve them for
those who ask, rather than clutter the whole Parkinsn list.
Cheers,
Joe (Waiting for Entacapone!)
--
J. R. Bruman   (818) 789-3694
3527 Cody Road
Sherman Oaks, CA 91403-5013