Mary Hawking wrote about riluzole
MA>I phoned the HA Medical Adviser - always helpful - about the two
MA>problems - professional / legal and financial.
MA>I'm not a fundholder.Finance not a problem
MA>Suggested that *if* I wanted to co-operate, should establish
MA>1.responsibility - who does the patient contact , especially OOHs, and
MA>who is responsible for monitoring;
MA>2.need written protocol
MA>3.agree review dates and criteria for continuing or discontinuing
MA>treatment.
^^^^^^^^^^^^^
But here is one of the problems.
Riluzole has only been shown to prolong the time to
tracheostomy / death and not improve the quality of life.
There is no way to stop the drug as it's effectiveness can
only be assumed - i.e. a slowing of the rate of progression
which in MND is remorseless and unremitting with not even a
hint of a plateau let alone remission.
The paradox is that with this drug monitoring is easy - stop
if they go yellow. Why do LFTs? So what if the ALT goes up,
they have terminal illness anyway.
(It has also only been shown to "work" in two trials, both
from the same workers, and one of which has been rubbished)
______________________________________________________________
Dr. David Jobson
The Surgery, Main St Surgery Tel +44 (0)1728 830526
Leiston Surgery Fax 832029
Suffolk Home Tel 831100
IP16 4JG email [log in to unmask]
* SLMR 2.1a *
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