At 02:24 PM 1/11/99 -0600, you wrote:
>Hi everyone--I am Carol Gray 58/diagnosed at 37.
>
>When I was told by my neurologist that I would hsve
>to have lab work every other week to stay on Tasmar
>I said "no way." But after just a few days of cutting
>my dose to get off the Tasmar---the freezing and stiffness
>was much worse and I decided that whatever I had to do
>I would do to stay on Tasmar. Folks --- to me the
>quality of my life is the most important thing!
>
>
Carol a good many around the world have done well on Tasmar and like
agonists, withdrawing from Tasmar puts you back into an underdosed state
with all problems many had before.
Getting off the horse is as hard as getting on the horse. It takes planning
and patience.
The liver concern was raised in the NDA. Most folks tolerated it well but
the few that didn't raised the stakes so high that government agencies and
Roche seeing a diminished market, withdrew it. The feedback I get from
major researchers is off the record they are recommending monthly rather
than bimonthly blood work.
COMT deserves more time in the population for research because it seems to
have met the goals of its billing. Long term usage/risk needs to be studied
in populations of more than a thousand. Leaving it available in at least
the US and or Canada would seem proper although the supply has dried up in
some parts of the US.
Any threat to a Parkinsonians liver is serious and can bring to an end the
therapeutic effects of all drugs now available.
In ways, the introduction of Tasmar was met with such consumer demand that
the prescribing doctors didn't always require the initial blood workup...so
reactors may have been missed in the process. The "Dear Doctor" letter to
the FDA attempted to insure that prescribing doctors be aware and follow up
on blood work as a condition of treatment. The effect of this letter
increased the cost of treatment beyond the perceived benefit for busy
physicians who could be later liable and for the patient/insurer paying the
bill.
Since the prudent withdrawal of Tasmar was not prudent in some
countries...but done rather overnight, the freezing phenomena has come to
the forefront without guidance from the same physicians who were so
enthused to have their patients try it.
The Tasmar letter, now in the public domain, will give some insight to the
mechanism to withdraw with minimal effects as the sinemet is increased and
the Tasmar is decreased. Since the therapeutic 'cocktail' is always
changing...the equilibrium point may be different from when Tasmar was
introduced into the mix.
I can't fault Roche Pharmaceutical for bringing this drug to market because
they were very diligent and open in reporting on their study progress. We
have the first abstracts of their presentation at the AAN convention in
1995 in the Parkinsn Current Topics Index. A listmember/doctor was one of
the investigating researchers on this drug. Other recently introduced drugs
were not as open during their trials.
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John Cottingham
