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joe's story
a PIEnet message thread
14
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Date: 1999/01/11 Monday
From: Joy Graham
Subj: Re: a PWP friend needs help/Tasmar again
Dear List members,
Judith wrote, in part:
>I also think he was taken off Tasmar too quickly. We have also
>heard from others who had freezing problems when they were coming
>off Tasmar, but none as severe as what our friend was experiencing.
I guess folks all around the world are "coming off Tasmar" - and maybe I
missed out on discussions about this on the list - but I have not heard
much from those List members.
In Australia, Tasmar is being withdrawn from the market on Jan 25th and
physicians were sent a document from Roche, instructing them on how to
take
people off Tasmar.
(I should add that there is a move from neurologists, to reverse this
decision - at least for those for whom this drug has indeed been a last
resort wonder drug).
Although there were relatively FEW pwp on Tasmar in Australia, the Perth
experience is that NOT ALL DOCTORS/NEUROLOGISTS CONTACTED THEIR PATIENTS
TO GIVE THEM ANY ADVICE ABOUT HOW TO COME OFF TASMAR.
WAS THIS THE EXPERIENCE OVERSEAS? In other Australian states?
IT WAS ONLY THROUGH AN ARTICLE IN OUR LOCAL NEWLSETTER THAT MANY OF OUR
MEMBERS LEARNT FIRST OF THE PROBLEM, AND SINCE THIS HAPPENED OVER THE
CHRISTMAS/NEW YEAR PERIOD, WHEN DOCTORS WERE NOT AVAILABLE, THERE WAS A
POTENTIAL FOR PROBLEMS (as you will see when you read below).
IF A DOCTOR KNEW OF THIS ADVICE BUT DID NOT ACT ON IT ... - well, I don't
think I have to spell out the rest of the question...
On Dec 10th, Roche wrote the following:
"Dear Doctor,
It is imperative that you contact your patients who currently receive
TASMAR to establish a treatment plan for the discontinuation of Tasmar
and also to ensure that the patient has an adequate supply to
discontinue Tasmar safely.
Advice on Discontinuing Patients from Tasmar:
...Withddrawal or abrupt reduction in the dose of Tasmar (as with any
medication that increases dopaminergic activity in the brain) may lead
to worsening of the signs and symptoms of PD, particularly akinesia
and rigidity (withdrawal or akinetic syndrome) or rarely, neuroleptic
malignant syndrome (NMS). The characteristic clinical features of NMS
are:
1. Autonomic disturbance with elevated temperature, tacy or
bradycardia, hyper or hypo tension and excessive sweating.
2. Muscular rigidity, dystonia or myoclonus which may be severe.
3. Altered consciousness with agitation, somnolence, stupor or coma.
4. Laboratory features include elevated CPK due to muscle injury,
elevated white count and other abnormalities which may be the result
of the duration and severity of the above clinical abnormalities
(i.e electrolyte imbalance).
In clinical studies, the withdrawal of Tasmar was not systematically
studied, therefore there is no firm evidence to support any specific
schedule for discontinuation of treatment.
Tasmar was stopped without tapering off in clinical studies. Based on
this limited experience, the following recommendations would apply when
stopping Tasmar treatment:
1. Patients should be monitored very closely
2. Levodopa and/or other dopaminergic treatments should be
increased according to the patient's symptomatology.
3. The amount to increase dopaminergic treatment after stopping
Tasmar, although individualised, may be related to the size of
the reduction of levodopa and other dopaminergic treatments
necessary after beginning Tasmar, especially if Tasmar has been
started recently.
4. Readjustment (increase) of levodopa and/or other dopaminergic
medications after decreasing or stopping Tasmar will probably be
necessary soon afterwards, i.e. perhaps within the same day.
Discussions with neurology opinion leaders has yielded further advice,
and although this has not been substantiated in clinical studies,
several of them prefer a more cautious approach involving a tapering
off period for Tasmar treatment:
1. It may be preferable to continue the same dosing of Tasmar
and to just discontinue a single dose of Tasmar.
2. Levodopa and/or dopaminergic treatment should then be
adjusted for that dose interval.
3. Once the patient is stable, a second dose of Tasmar can
be discontinued and once again, adjustments can be made to
the patient's other dopaminergic anti-parkinson's medications
as necessary.
4. Finally the remaining dose can be stopped and once more,
adjustments can be made to the patient's other medications
as necessary.
5. The frequency of titration steps will depend on how long
it takes to determine whether the patient is stable after
each change.
For patients taking 200mg Tasmar three times a day (t.i.d.), it is not
clear whether it is more appropriate to first reduce the dose to 100 mg
(t.i.d.) prior to discontinuation, or alternatively discontinue Tasmar
directly according to the recommendations above."
I am sending this to the List, in light of what Judith has told us of her
friend's experience, and because, since I have this information, I feel
duty bound to share it with you.
I hope it is not too late and I am sorry that I did not send it earlier.
Sorry if this is "old hat" to you.
Joy Graham (CG Bob, 59 10 years)
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updated
1999/06/09
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joe's story: a PIEnet message thread: 14
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janet paterson
52 now / 41 dx / 37 onset
snail-mail: PO Box 171 Almonte Ontario K0A 1A0 Canada
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