Dear Rose, +++++++REPLY IN YOUR TEXT++++++++ ---------- From: Peter Leach <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Subject: tolcapone - fatigue Date: Thursday, March 26, 1998 6:24 PM Dear List members - this is my first message to the list, although my partner Peter and I have been keen list readers for some time, in spite of being cut off for a while due to problems with our ISP I am 50 years old having first been diagnosed with Parkinsons in 1990. We live in North Notts, in the UK and have experienced real problems in obtaining information and support from the Neurology department in our nearest major hospital, which seems more interested in research than patients. Currently I am taking 3 100mg Tolcapone at 6 hourly intervals and 4 125mg+++++++++this is 25 mg carbidopa, 100 mg levodopa ++++++++ Levodopa is the active ingredient. Carbidopa is a protectant for the levodopa part of the Sinemet tablet..[protects the levodopa from decarboxilase enzyme in the torso which would otherwise consume >90% of the levodopa. Without the carbidopa you would need monstrous doses of levodopa which make most people vomit. Remember.your Latin? Sine=without, emetare=to vomit: hence Sinemet = don't throw up pills Tolcapone [TASMAR] is like carbidopa except it works against the second strongest destroyer of levodopa known as catechol O methyl transferase enzyme. tablets of Sinnemet CR daily. I have reduced the Sinnemet CR from 7 which I was taking before starting Tolcapone in November I am not experiencing side effects such as nausea or bowel problems from the Tolcapone but I am experiencing 2 problems at the moment One is that I am simultaneously experiencing symptoms of underdose of levodopa (poverty of movement) and overdose of levodopa (stiffness). I have tried altering the timing of my sinnemet in different ways but have not been able to change this. +++++++++you are getting less levodopa than before. About 30% of the CR tablets are lost in the gut since the tablets are so hard to dissolve, presuming you are on the 25/100 [regular yellow oblong tablets] Sinemet: You are taking in 400 mg levodopa. presuming your 7 CR were 25/100, you were taking in 700 mg of levodopa with about 490 mg effectively before. The researchers are wanting to see if the tolcapone will make up for the 90mg deficit. If you were on the 50/200 CR, then were on effectively 980mg and that 580 mg deficit is far too much to have tolcapone make up for. Poverty of motion and stiffness are both signs of too little levodopa. Tiredness is also a low dose symptom. My greatest problem has been an increase in tiredness - I am feeling much more tired than before, this is especially so in the evening but also is happening much more during the day. This is a particularly difficult problem for me as I care for my 17 year old son who has severe learning difficulties and a severe heart condition - there are many times in the day when I am feeling whacked out and resting is just not possible A learning disabled 17 yr old is enough to tire anyone in many cases. If there is anyone on the list who has experienced similar problems from the Tolcapone I would really like to hear from you or if there is anyone who thinks I may be barking up the wrong tree and can point towards a different solution to these problems please get in touch. Will Johnnston A.P.D.A. DelMarVA Chapter Pres. 4049 Oakland School Road Salisbury MD 21804 USA 410-543-0110 Love to you all Rose [log in to unmask]