Dear Barbara,
Thank you for your concern. Yes, I know that i take a great q uantity of
sinemet. It goes back into te early history of my treatment. I was
diagnosedwhen I was pregnant, 16 years ago, although I h ad had symptoms
for many years before that. I wasnt given any meds till the baby was
weaned - just physiotherapy - then the doctor tried symmetrol, which
didnt't seem to work, so a whort while he put me on sinemet - low
dosage. Shortly after that, we came to the States. I saw a neurologist
- not a PD specialist - and he decided to be very aggressive - put me on
increased sinemet PLUS bromocriptine PLUS amantadine ( which I did not
know then was the same as symmetrol) I went through another ppregnancy
on this regimen, and appeared to be doing fairly well with the PD, but I
was getting almost daily migraines ( always a big problem) and my legs
were swelling and I appeared to h ave developed Reynauds. And the
neurologist dedcided (THank goodness) that he was not really qualified
to treat me. So I switched to Dr Maureen Polsby, a young , extremely
competent PD specialist
recommended by one of the PD ASsociations ( I dont remember which, I
didnt go to a support group then)
She took me off every thing, except sinemet, and added eldepryl which
had just come ont the market. My sinemet consumption dropped to about a
fifth of what it had been, the migraines reduced in frequency and
intensity, the Reynauds disappeared, and my legs went down to normal
size. But it is not really possible to state with any degree of
certainty, which medication produced which side effect, tho one can
make educated guesses. That was 6 or 8 years ago. Now I see Dr Lynda
Sigmund, who is noted among other fine qualifications, for her skill in
juggling medications. Yes, she knows my daily (and nocturnal) med
routine.
this is one of the reasons why she has said that I have just about
reached the end of the road with medication, and has recommended surgery
- which is why I am investigating the possibllilty of DBS
BUT
(and I am almost afraid to put this in writing)
Ten days ago, I asked Dr Sigmund if I could try taking amantadine
again. I had read on the list that some pwps were having a fair amount
of success with it. And she said why not? and - I guess it was the
amantadine - its been like a miracle. As long as I take my meds on time,
I have hardly any symptoms of PD. The horrendous dyskinesias that seemed
sometimes to go on for hours at a time, the dystonias that woke me up in
the night - for 10 days they have been virtually non-existent. Oh I
still have PD, no miracle cure for me - but most of the side effects
have been drastically reduced. I don't want to get too excited too
quickly - five of those 10 days were spent on vacation, where I had
someone helping me, and no responsibilities .....
so stress (or lack thereof) might be the factor that has wrought the
change. And I'm a little more dyskinetic today than I was yesterday -
well time will tell.
And it hasn't enabled me to cut down on the actual dosage of sinemet -
just reduced the side effects.
So That's the story.
Hilary Blue (49/25/16)
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Barbara Blake-Krebs wrote:
>
> Hilary, your schedule for taking sinemet really took me aback due to the
> frequency and the habit of taking it through the nite. Is this something your
> doctor has recommended?
>
>
> In our current PD newsletter, Dr. William Koller from our local Center for
> Excellence writes in his column in answer to this question--"Why do you
> recommend the least sinemet be taken?"
>
> The Dr. responds; "The goal of therapy in PD is to control symptoms with the
> least amount of medicine. Therefore, we want the lowest dose that adequately
> controls symptoms. This is because we think that taking too much medicine may
> result in future side effects." Longterm side effects associated with
> levadopa include motor fluctuations and dyskinesias. While we do not know
> whether taking less levadopa will decrease the onset of side effects, "it
> seems reasonable to limit the dose to only as much as is needed and later
> increase the dose as symptoms worsen."
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I think my story accurately illustrates this point.
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>
> Of course, I might add what is often noted on this list, defining how much is
> needed is very individual due to such factors as our physical response to the
> meds and our personal tolerance for and perception of how we are functioning
> with any given treatment regimin..
>
> Regards,
>
> Barbara Blake-Krebs 58/1984
