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Dear List members, Judith wrote: >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 In Australia, Tasmar is being withdrawn from the market on Jan 25th and physicians were sent a document from Roche, instructing them on how to take people off Tasmar.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 akinisea and rigidity (withdrawal or akinetic syndrome) or rarely, neuroleptic malignant syndrome (NMS). The characteristic clinical features of NMS are: - autonomic disturbance with elevated temperature, tacy or bradycardia, hyper or hypo tension and excessive sweating - muscular rigidity, dystonia or myoclonus which may be severe - altered consciousness with agitation, somnolence, stupor or coma - 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: - patients should be monitored very closely - levodopa and/or other dopaminergic treatments should be increased according to the patient's symptomatology - 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. - 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 yeilded 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. - it may be preferable to continue the same dosing of Tasmar and to just discontinue a single dose of Tasmar. - levodopa and/or dopaminergic treatment should then be adjusted for that dose interval - 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. - finally the remaining dose can be stopped and once more, adjustments can be made to the patient's other medications as necessary. - 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)