I had been taking SINEMETCR 50/200 twice a day since my diagnosing neuro
had ruled out stroke or tumor for my unilateral symptoms(sore left
shoulder, numbness in left arm, elbow, shldr and hand and a general "not
feeling good" with some unbalance and at least two trip & fall incidents).
I think he prescribed sinemetcr to test his pd diagnosis "in someone who is
young" for pd. It probably took less than 2-4 weeks and I could move
better, shldr/arm hurt less and my "mood" was better.
I had gone to an mds for a 2nd opinion after two months and one f/up visit
with lst neurologist. The dx of pd was dittoed by mds. When I asked, "Is
this as good as it gets?", referring to my improvement on levodopa/cardopa
but realizing that at times I was still stiff, muscles got more rigid and
of course, fatigue, the mds responded by adding lst an agonist,Requip and
at a later appointment segeline when I complained of drowsiness caused by
the agonist. It seemed if I complained, a new drug was added.
I was reading all I could about pd, drugs for pd, and trying to be an
informed patient. In 1998-99 alot of medical info was published stating
that neuros were split on agreeing at what time to start levodopa and with
new agonists, REQUIP & MIRAPEX, some were prescribing monotherapy with an
agonist, especially in younger patients and apparently with some successes.
I decided to ask my mds if he would recommend staying on agonist, mao
inhibitor(segeline) and levodopa/cardopa or if monotherapy with an agonist
made better sense because I was still only 48. He said he thought that was
a good idea and if he'd been my diagnosing neuro he probably would not have
given levodopa/cardopa at the first signs of pd in a person not close to
60.
Sooooo.....the trials with Mirapex, segeline combo and then with Permax
until side effects caused me to ask PLEASE can I take SINEMETCR so I can
move, be less rigid, have better "mood", not be drowsy/heartburn sufferer.
I posted to the list during this time and appreciated posts from many of
you who had opinions that differed from the one that recommends delaying
sinemet if a patient can function better by using it.
I'd compare how I feel using SINEMETCR over monotherapy with an agonist as
to the difference in taste of salted and unsalted peanuts, or the diff in
effect of real beer to near beer, or the diff in color photo of a rainbow
to a black/white photo of same. For me, levodopa/cardopa is the better
drug therapy.
Jeanette Fuhr 49/47/44?
----------
From: ERVIN J MCCARTHY <[log in to unmask]>
To: [log in to unmask]
Subject: Re: Mirapex side effects
Date: Tuesday, November 09, 1999 3:51 PM
Janet, I also tried Mirapex with similar results, swollen ankles and
drowsiness. I was advised to stop taking it. In talking to the pharmacist
if seems to be a common problem with Mirapex.I have now started on
SinemetCR
now in my third week at three
25/100CR per day with a goal of 6 25/100CR per day. I really do not notice
any benefits at this time. My question to you is how long did it take to
get benefits from the SinemetCR and what is your dosage? My Dr. claims
eight
week's for benefits. If SinemetCR was successful in the first instance why
did he take you off of it? Thank you
[log in to unmask]
----- Original Message -----
From: Leo Fuhr <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, November 09, 1999 7:25 AM
Subject: Re: Mirapex side effects
> In re:Mirapex side effects in my own history with PD meds, I took
> Mirapex(1mg 3xs daily) w/segeline for about 6-7 months. I had some
> drowsiness to the point I was afraid to drive alone at highway speeds and
> some dizziness that my mds said could be either the agonist, the mao
> inhibitor(segeline) or pd itself. I wanted to go back on SinemetCR but
lst
> tried PERMAX with the unfortunate side effect of extreme stomach acidity.
> Finally, I called and talked w/the nurse at my mds office and told her my
> pd symptoms were worse, my stomach was upset w/heartburn after all kinds
of
> food and could I PLEASE reintroduce SINEMETCR until my upcoming office
> visit in 2 weeks.
>
> My mds was paged, answered the page and said to slowly reintroduce
> SINEMETCR and decrease PERMAX. Have since stopped PERMAX and taking only
> SINEMETCR am feeling MUCH BETTER and pd symptoms of slowness, rigidity
and
> unbalance are now controlled in a way that allows me to enjoy work,
family
> life, and I'm enjoying the "honeymoon" that levodopa/cardopa provides.
>
> I'd hoped that agonist only would be effective for my pd symptoms, but
the
> side effects were worse than the symptom relief. You may find that
Mirapex
> works; it does for some pwp. I'd suggest being careful with any med
change
> to S L O W L Y titrate up and realize that a theraputic dose of test
trials
> may not be the doze that is effective for you. I often use LESS than
> recommended dose of over the counter drugs and have found through
> trial/error that pd doses for me are sometimes less than recommended by
> drug trials of drug manufacturers.
>
> Hope you figure out what is best. Patience and keeping a daily diary of
> when & amt of meds taken, foods eaten, stress of the day and how your
> body/mind feel when taking the new drugs can help you tell your dr/nurse
> how the drug makes you feel. It is often a good indication of what is
> causing a particular problem.
>
> Jeanette Fuhr 49/47/44?
>
>
> ----------
> From: Tina <[log in to unmask]>
> To: [log in to unmask]
> Subject: Mirapex side effects
> Date: Monday, November 08, 1999 8:21 PM
>
> I am looking for any info on Mirapex side effects....The only side
> effect I can find is about falling asleep. I am having bad joint pain
> in my knees. Just started saturday, and I started my full dose of
> Mirapex friday (1.5mg)day. I am also on Amantadine (generic for
> Symmetrel). Still having tremors and balance problems, so far Mirapex
> really hasnt helped me. I already have a call into my doctor, waiting
> for return call. Just trying to get more info before I see the doctor.
> He will not put me on sinemet because he says I am too young. He said
> the longer you take it, the worse side effects you get down the road.
> He said he only gives it to his older patients. My symptoms are tremor
> in right hand, and head...balance problems, fallen 5 times in past 2
> weeks, joint pain in knees, right leg dragging and freezing (which has
> caused most of falls), depression, fatigue, and trouble walking any
> distance. I am only 31 yrs old. Any info would be greatly
> appreciated. My doctor is really good, he and his team of doctors are
> third in the nation in pallidomy surgeries. I really am just looking
> for ideas or thoughts to bring up to my doctor when I go see him.
> Thanks, and sorry for being so winded.
>
> Tina-----Fairfield, Ohio
