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I have been on Tolcapone now for 8 weeks and so far have had variable results.

A bit of background first:-

I am 44 years old and was diagnosed with PD 9 years ago, although my first
symptoms appeared some 12 years ago.

After being diagnosed I was put on Sinemet and also the agonist Lisuride.  I
took my medication 4 times a day at 4 hourly intervals - Sinemet CR 25/100 and
Lisuride 200mcg.   As a "top-up" I took some Lisuride LS.   My PD was fairly
well controlled for quite some time but about a couple of years ago I had to
reduce the time in between doses to 3 1/2 hours and was suffering quite a lot
of erratic on/off periods which became more and more troublesome.  So when I
saw my neurologist in October and he asked if I would like to try Tolcapone,
having read a lot about it on the list, it was a case of "just try and stop
me"!

However, my neurologist said he would prefer me to come off the Lisuride first
and to do this slowly.  So over the next three weeks I gradually came off
Lisuride.  At first I didn't seem to notice a great deal of difference but by
the third week I was virtually climbing the walls with very long uncomfortable
offs and during the week I when I was just taking Sinemet CR it was a
nightmare and I couldn't wait to start Tolcapone.

So it was with relief that I started on 12th November.  I started with 1 x 100
mg Tolcapone per day and immediately I noticed a difference.  When I turned on
I was on for the rest of the day for the first five days.  On the sixth day I
had a longer off period so went up to 2 per day, which worked well for a
couple of days then seemed to wain a bit so by the 10th day I went up to 3 per
day.  Over the next couple of weeks it was very erratic in that I had some
days with no offs and the some with long offs.  I found I was having some
dyskinesia also so I increased the time between doses to 4 hours.  I felt I
was "missing" the Lisuride, so on 5th December I spoke on the phone to my
neurologist and he was suprised the Lisuride had obviously made such a
difference since I was on such a low dose but said to go back on the Lisuride
but to do this slowly.

So on 6th December, day 25 from starting Tolcapone, I  started back on
Lisuride - 1 a day to start and gradually increased until I was back on 4 a
day by 22nd December.

So as from 22nd December I have been taking 1 x Sinemet CR 25/100 + 1 Lisuride
200mcg - 4 times a day at 4 hourly intervals, with extra 1/2 Lisuride LS first
dose of the day, + 1 Tolcapone 100mg 3 times a day.  Therefore I have been on
this dose for just over two weeks.  (I also take Clomipramine for depression -
have taken this for several years now to control the PD symptom of depression
- the worst PD symptom in my opinion)

What I am finding now is that I do still get on/offs, but I don't go off so
badly or for so long and I seem to have more stamina (my husband says I
have!).   I do feel better for being on Tolcapone and so hopefully this will
continue.  As far as side affects go I have not suffered from diarrhoea or
nausea and the dyskinesia has not been too drastic.   I have been having a lot
of drenching sweats lately though and although sweats have been a problem to
me for quite some time,  I think they have been a bit more pronounced lately.

I shall keep you informed of my progress on Tolcapone.

To Sonia - sorry to read you have not had such a good response to Tolcapone,
its very frustrating isn't it - what works for one may not always work for
someone else.  (BTW I too thoroughly enjoyed the Vienna New Year's Day concert
- I look forward to it every year)

Best wishes

Susan HC 44/12  UK