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Regarding Sinemet.

was recently put on Propranalol to combat his night spasms. They seem

to have eased a little, but not as much as I would have hoped for. I asked

our GP about Sinemet, not knowing if it was available here in UK. His

reply was that the side effects are so bad would be better off with

the spasms. We have taken his advice and left well alone.

JILL

Re: DRUG INDUCED PARKINSON'S/SINEMENT

>Date: Mon, 07 Oct 2002 22:54:02 -0400

>

>,

>

>You asked for comments - here are mine.

>

>Please note that the first article refers to medicines taken BEFORE a

>diagnoses of PD (earlier in life). Dyskinesia IS a side effect of

Sinemet,

>but is NOT a symptom of PD or MSA and can often be treated with Amantadine

>or lowering the dosage of Sinemet. OH - CAN be a side effect of Sinemet,

>but the Sinemet allows somewhere between 30 and 45% of MSA patients to

have

>some movement, so it is a decision that the patient and doctor have to

make

>on an individual case by case. Most here have not taken Sinemet (El-dopa)

>before they were diagnosed with PD. If you are taking more than 3 Sinemet

>25/100's per day, it could be extremely bad to suddenly go off Sinemet

>without ramping down. We have also heard of people on the list (diagnosed

>with MSA) who were taken off of Sinemet by their doctor to test it's

>effectiveness and even though they had no " On and Off " periods, many lost

>significant movement within a day or so - which leads some doctors to

>continue to give it to the patient. I have told people on the list for

>well over three years that Sinemet could cause hallucinations especially

if

>you are getting too much of it.

>

>Florinef was not mentioned in either of these articles and I find little

in

>the way of evidence that it causes symptoms of MSA or PD. It is very

>beneficial to many MSA patients in maintaining their BP at acceptable

>levels. Going off of this medicine can cause a MSA patient's BP to drop

to

>unacceptable levers.

>

>However, there ARE medicines which DO cause side effeccts like MSA and PD

>symptoms such as amphetamines and opiates (pain-killers). Even overdoses

>of things such as SOMA (a muscle relaxer) can cause MSA like symptoms.

>Since MSA symptoms are MUCH closer to side effects of amphetamines and

pain

>killers (or even overdoses of muscle relaxers), why don't you point that

>out as well as Sinemet? I freely admit that amphetamines, opiates and

>man-made painkillers can cause many MSA like symptoms. Since you are

>trying to help people, point out that pain killers can cause MSA symptoms

>to get worse or even cause MSA symptoms.

>

>It is ALWAYS good to read the information sheets that come with your

>medicines and report to the doctor any side effects that you see listed on

>the sheets. But if you read the second source you gave (Table I) you will

>see that very few people had symptoms other than the well known ones of:

>dyskinesia, nausea (which can usually be avoided by eating a cracker with

>your pill); hallucinations (usually a sign of Sinemet overdose - but can

>also be caused by MSA itself); and confusion (which is also caused by many

>other things such as UTI's).

>

>If you are taking Sinemet for MSA, you should work carefully with your

>doctor to regulate your Sinemet dosage. Several of us have discussed this

>before, including Jim , myself, the Ford's (Australia), Barb

Selleck,

>Barb , etc. Even back three years ago.

>

>Ralph Selleck used Sinemet and did have MSA according to his autopsy. Ken

> was diagnosed as MSA, Sinemet helped him - and he had LBD according

>to the autopsy - but it is still a degenerative brain disorder.

>

>Charlotte was diagnosed as " Probable MSA " in 1995 at NIH by a group of

>experts in brain disorders after two brain MRI's, a nerve conduction

study,

>an EMG, several full back MRI's and neurological examinations by three

>different neurologists over a 5 year period. Two of those neurologists,

>Dr. Pincus (then at town Univ) and Dr. Sigmund are advisors to the

>Washington, DC Parkinson's support group. None of them mentioned any

other

>test.

>

>I am curious since Sinemet DOES help many people on the list and a few

have

>written me off list asking if they should stop taking it. I have told

them

>to ask their doctors - am I wrong in telling them to ask their doctors?

>Note to all - to me - asking questions should NOT be condemned on this

list

>- it is NEVER dumb to ask questions - the most intelligent people I know

>always ask questions until they completely understand the answers. That

>was the way I made a living, asking questions until I understood the

>problem.

>

>It is NOT that I don't want people to know facts about meds. It is how

>those " facts " are presented. It seems to me and some others on the list

>that you are saying that Sinemet and Florinef caused Deborah to be

>diagnosed as PD or MSA. Is that what you are saying? If so - exactly why

>do you feel that way? Did a doctor tell you that? I still do not

>understand why I can not get an answer to these questions. I am NOT

>questioning that Deborah has some sort of problem. I am sorry she has a

>problem. I am interested in making sure people ask their doctors before

>going off ANY medication as I feel not telling your doctor you are

stopping

>a medicine can hurt you. If you agree that a patient's doctor should be

>the final authority on stopping medicines, and that you should watch ALL

>medicines for side effects, we probably have no argument.

>

>Take care, Bill Werre

>

>------------------------------------------------

>

>

> Setzer wrote:

>

>>Hi every one, In doing some research on INDUCED PD/PD+ syndrome symptoms

I

>>found this posted on the PIEN list the other day.

>>

>>http://www.parkinsons-information-exchange-network-online.com/archive/

093.html

>>

>>Also, here is another link concerning Sinement.

>>

>>http://www.sinemetcr.com/cross_site/CurrentSinemetCRPI.pdf

>>

>>I also would appreciate your coments about reading these and other Doc's

>>that I find and post from time to time. If these are something that the

>>list does not want or need, just let me know and I will stop posting them

>>here for you to know about. OK ? I only do this because I sincerly care

>>and feel that every one should know but some times a person can cause

>>others harm, and that is something I do not want to have happen. These

>>posting have been just for your information only.

>>

>> " tenacity's man "

>>

>

>

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Jill,

In MSA Sinemet is used mostly for rigidity and not spasm control. In

some people the levodopa in Sinemet gets into the brain and turns to

dopamine - which seems to help fight rigidity. But after years of use,

Sinemet tends to help less and less - especially in MSA. But some -

like Charlotte got some relief from Sinemet for as much as 12 years. She

did get the dyskinesia in later years.

Take care, Bill Werre

=================

Gillian Bourke wrote:

>Regarding Sinemet.

>

> was recently put on Propranalol to combat his night spasms. They seem

>to have eased a little, but not as much as I would have hoped for. I asked

>our GP about Sinemet, not knowing if it was available here in UK. His

>reply was that the side effects are so bad would be better off with

>the spasms. We have taken his advice and left well alone.

>

>JILL

>

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