Janet,

Thanks for your data on all the new drugs.  One of the new drugs mentioned
in your report is Ropinerole which I have been trying.  For those who are
interested in this drug, this is how I have found it.

BACKGROUND:  The type of PD I have is of the Bradykinesic variety - slow
movement and difficulty in writing. I have never had standing tremor. Since
ceasing Eldepryl 18 months ago, I have had to increase my Sinemet CR 200/50
from twice a day to three times a day.  The Sinemet CR worked well enough
except for a "GAP" which appeared between the morning Sinemet and the midday
Sinemet.  I found that the morning CR was going off at anything between 3
hours and 3hrs 45 mins after taking it. 3 hours 30 mins was average. The
fact that the midday CR was then taking about an hour or more to kick in,
meant that it was making a bit of a mess of a vital part of the day.

I started Ropinerole at 0.25mg three times daily and built slowly to 1 mg 3
times daily after about 4 weeks, but was still not getting any noticeable
effect from it at all. As I was not withdrawing from any other drug to go on
Ropinerole, but simply adding it to the Sinemet, I was pretty disappointed
at this. (There was maybe even a slight adverse effect on the symptoms, but
perhaps this was my frustration))

I was between visits to my Neuro and was thinking of booking an extra
consultation, when I happened to have a chat on the phone with a Professor
of Neurology specialising on PD research.  During our chat, he asked me how
I was getting on and what I was taking. I told him that I had started
Ropinerole and was now on 1mg 3 times daily.  Without me saying a word of
how I was doing on it, and without hesitation, he said,

"Not enough! Lift it to 2mg 3 times daily. Taken at low doses below 2mg, it
actually shuts down dopamine cells.  Many people don't realise this and give
up on it too early."

So, I returned to my doctor, got the prescription, and started increasing
very slowly from 1mg x3.

Up to 1.5mg x 3 no noticeable effect.

At 1.75mg x 3, I thought I detected improvement.

2mg x 3: Jackpot!  The midday "off" gap disappeared. 27 days later - STILL
NO MIDDAY "OFF" GAP.

In the 27 days since reaching 2mg x3 I have:

1. Managed on several occasions to delay the midday CR tablet by half an
hour, so that I was leaving 4 and a half hours between morning and midday
tablet - and still getting no "off" gap.

2. Left a gap of 4 and a half to 5 hours between midday and evening CR
without an off.

3. I have also halved the evening Sinemet dose from a Sinemet CR 200/50 to a
100/25 CR, and have still had my evening "on" last up to 7 hours. (average 6
hours)  I used to only get 4-5, (occasionally 6 hours) on a FULL CR!

Once, I tried halving the midday dose of CR - No problems, still no gap. I
am thinking to try this again, but have been reluctant to mess about too
much as we have been a bit busy lately.

Also, the mild end of dose dyskinesia I used to get at the end of the
evening (right foot wanting to wriggle around) seems to have disappeared.

I have been taking the Sinemet 40 mins pre meals as usual, but the Requip
AFTER meals. This means the REQUIP follows the Sinemet by 1-2 hours. My
reasoning is that by staggering the Sinemet and REQUIP like this, it fills
the gap. It certainly works.  I would be interested in how others on
Ropinerole are taking it.

Adverse symptoms?  None at all to date.  There was a slight effect I noticed
for a couple of weeks, mainly in the evenings.  My affected arm would twitch
slightly as if it was getting dyskinesic.  It wouldn't actually move, nobody
would notice, but I could feel it.  I did not worry too much, because the
REQUIP leaflet listed some "transient involuntary movements" as a side
effect.  They ceased after a couple of weeks, especially after reducing the
evening Sinemet dose, and I cannot say I have had any other side effects at all.

I hope this is encouraging to those who may have have found Mirapex a
disappointment.

Ernie. 54/3.8
Ernie Peters <[log in to unmask]>