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^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 50/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses 13 deg. F :-) brrrrr! Where's Santa Claus?? ******************************************************************** On Sun, 19 Dec 1999 01:37:57 -0500 Michel Margosis <[log in to unmask]> writes: >Ivan M Suzman wrote: > >> I definitely continue to do much better on >> Tolcapone (Tasmar) with Sinemet plus Selegeline >> Hydrochloride, than with no Tolcapone. > (Michel then continues:) >That may be well and good, but nonetheless, Tolcapone >HAS demonstrated a capacity for irreversible fulminating >hepatitis for some (CUT) *************************************** Hi Michel, I can understand your hoping that Tasmar could help Barbara. After all, each of us PWP's tries to believe that a long-awaited, new drug like Tolcapone (Tasmar) may substantially improve our level of functioning. If Barbara's neurologist is uncomfortable letting her try Tasmar, that is totally understandable. I went through quite a soul-searching when I realized that Tasmar is claimed to cause fulminant hepatitis. That claim took away so much hope that we PWP's had built up, waiting for what seemed like forever for Tolcapone to be introduced, and then, seeing it withdrawn in most countries, or severely restricted. Michel, a Roche representative , at our Maine PD Symposium in September, told me that there are 3 deaths imputed to be Tasmar-related. He said that in all three, Tasmar had NOT been proved to have been the cause. The 3 patients who died, according to the Roche representative , all had osteoporosis. Each PWP was a woman in her seventies, he says. We do not know something critical: Did any of these 3 PWP's have PRE-EXISTING liver problems? Moreover, he said that the death rates are claimed to be 1/60,000 from fulminant hepatitis in the Tasmar population, compared to 1/100,000 in the general population. Is the risk REALLY meaningfully higher? He said that there is no explanation about why or how Tasmar could alter the liver's function enough to cause death. He did say that so much profit is made by Roche from manufacturing VALIUM, that withdrawing or restricting Tasmar is not really a concern for Roche. He added that the PWP lobby is virtually unheard by the corporate executives of Roche. He also agreed with my own opinion that Tasmar is new and unfamiliar. We cannot really expect most doctors to know how much Tasmar per dose is beneficial. My neurologist had me take a very cautious approach. Two years ago, I started with 50 mg per day , or only 1/2 of a single 100 mg Tasmar tablet. My liver enzymes did not elevate. In fact, they are at very low levels, safer than the normal range. The diarrhea and blood loss experienced by some PWP's might be related to too high a dose being prescribed. Roche would have to get a clear message to make 50 mg pills, to test the idea that the amount per day or per dose might be the main problem, in cases where diarrhea is a problem. After 2 years on Tasmar, I know what a HUGE difference it makes for me. I take 50 mg, 4 times / day. I have been so fortunate. From the very first dose I took, I have had longer on-periods of 3 hours or more, instead of 90 - 120 minutes. I can take my Tasmar at the beginning of a meal, and it can allow me to eat, sometimes, much more protein. I even drove to Boston, 110 miles of highway, at night , after a steak dinner, two weeks ago. Before Tasmar, this was IMPOSSIBLE. (Michel concludes:) > There is no indication as yet as to what >may predispose an individual to respond negatively to that >drug. Our neuro has strongly discouraged the use of Tasmar >for Barbara because she's had biliary and other hepatic >problems in the past. Also, she could not afford the weight >loss of blood every forth night. >Be well my friends, >Michel