Dear Brian,
I would truly appreciate a copy of your book. I will send money for
postage. Their is an underlying problem to this question of medication.
The neuros that don't specilize in PD haven't got a clue as to dosage or
proper drug intake. As we have all been told by countless neuros that
demerol is not dangerous to take with eldepryl. I would think it would be
prudent to err on the side of caution. However, as most PWP soon find out
that we the patient are deferred to self prescribe our drugs. In fact my
neuro, who happens to be a wonderful man, always comments that I am more
knowledgable than him. Well, most of you have been exposed to my limited
noggin capacity, do you really think this is wise. I know what the response
will be. But, there are in fact, none (0) movement disorder specialists in
Maine. My alternative is to go to Boston.
I did see a movement disorder specialist in Boston. Three years after
diagnosis, and a solid history of successful Sinemet drug therapy, he
immediately told me I suffered some form of Dystonia instead of PD. We went
through the same battery of tests I had the first go around. My point is
that why should we the patient be expected to search the countryside for a
specialist. Don't answer that. I know, because there are not any
alternatives.
Regards and thanks Brian, (coincidently if you transpose the vowels in
Brians name what does it spell)
Greg Leeman 37/7
-----Original Message-----
From: Brian Collins <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Friday, March 27, 1998 12:45 PM
Subject: Re: drug intake {Greg} .
>On Fri 27 Mar, Gregory E. Leeman wrote:
>> Bobby,
>>
>> You are right. I should be more careful. I think with another day of
>> Tasmar, I definitely am going to try either the 25/100s or maybe even the
>> 10/100s. If they are too week and I find I have to take the meds too
>> frequently I can always switch back. I have been having muscle cramping
>> with the Mirapex so I am trying to wean off that. I am back to 1 MG
(3)x
>> daily.
>>
>>
>>
>> >Greg how did you get such a big dosage of Mirapex 150mg ? I only take
1mg
>> >x4 per day and I thought that was a lot. But otherwise you sound so much
>> >like me . I take 50/200 CR 3-4
>> >per day but Im like you in kinesia dept as it always comes on about 2nd
>> >dose of the day.
>> >Again like you I feel like I should go back to Non CR Sinemet . What are
>> >your thoughts
>> > Bobby
>> >
>
>The exchange summarised above worries me for 2 reasons:
>
>1/ Greg writes about trying 25/100s (of Sinemet I assume) "or maybe even
> the 10/100s". There appears to be a belief that the 25/100 tablet is
> more powerful than the 10/100/. This is not so: Both tablets contain
> exactly the same amount (100mg) of levadopa which is the active
> ingredient. The 10 and 25 numbers relate to the no. of milligrams of
> carbidopa in each tablet. Carbidopa's job is to protect the levodopa
> from attack during its journey through the bloodstream. It cannot
> cross the blood/brain barrier into the brain. The only significant
> figure that you need to remember is that you need a minimum of 75 mg
> of Carbidopa per day, and a maximum of about 300mg/day of Carbidopa.
> (this limit is not critical, but it is important to stay above the
> 75 mg/day level. If you want to experiment with your intake of
> levadopa ( And I am all in favour of doing this) please keep the
> following points on mind when you are doing it.
>
>2/ trying to achieve an optimum dosage level of levodopa by varying the
> NUMBER of tablets you take is like trying to cruise in a car at (say)
> 40mph with a throttle which has only two positions, Idle and Max:
> You are going to get wild swings either side of your intended value.
There is no reason why you must use such coarse variables: Try
> breaking the Sinemet in half and adding it to your basic dose. Better
> yet, try and get some Sinemet LS as they are called in the UK. Each
> tablet contains 12.5/50 mg of Carbidopa/Levadopa (Half that of a
> regular Sinemet. If you break that in half you will be getting a bit
> more precision into the exercise, and may find it possible to stop
> the tremor without provoking dyskinesias.
>
>There is a lot more to finding your optimum dosage. I am convinced that
>most PWPs suffer un-necessarily because their GP or Neurologist cannot
>see round the mental block that seems to limit them to an " If one
>tablet is not enough, try two" approach.
>
>Some time ago, I wrote a booklet titled 'Living with Levadopa' for the
>members of my local branch of the PDS, giving tips on how to get the best
>out of levadopa (and avoid the worst of it). Maybe I should try something
>along those lines for this list?
>
>Regards,
>--
>Brian Collins <[log in to unmask]>
>
