Here is a copy of my Internet exchange on Mirapex: first, my initial request
and then first round of responses.
Then I informed everyone that I intended to create this Summary and post it to
the net unless I received a response telling me not to do it. (I r'c'd none.)
However, three responders asked to add something. I'll post it in "Part 2"
shortly.
I hope this proves useful to give a picture of Mirapex's usage too help them
in discussions with their neuro, dr,......
Phil CG wife Carol 62,15
My Orig. Post
How many responses on this list could begin "I'm sorry to hear...."? It is
especially poignant to read all these Tasmar stories when my wife, Carol 62/15
has been going through similar withdrawal from it and now is trying to
readjust her meds to compensate. For the PD meds, the Mirapex is the new
addition and I question the dosage. She began with 3 x 0.125 mg spaced thru
the day, 3/8 mg total, or "A whiff of it" as her neuro stated. I saw someone
on the list taking 3 mg/day (3 times Carol's dose). I would appreciate a
response from those taking Mirapex as to their dosage before I talk to her
neuro's who are working closely with us. (No changes are made w/o their
approval.)
Her daily meds are summarized below. We have developed a more detailed Excel
spreadsheet that can be used daily showing times, allowing entry of the times
actually taken, and a simple hourly form to record functionality. (If anyone
wants to receive a sample of this form email me off the list and I'll send it
as an attachment.)
For the dry mouth, a humidifier that many of us in New England use with our
weatherized houses and dry heat (wood stoves,....), is probably too
simplistic, but might be worth a try.
Again I ramble and throw in everything but the Kitchen Sink, so let me
reiterate MIRAPEX USERS I would really appreciate receiving your dosages and
any comments on you successes with Mirapex.
Thanks.
Phil CG for Carol 62/15, Wife 39
pic37 on undernet channel
DRUG total daily
Summary (mg)
Pills dose (mg)
Sinemet 25/100 6 1/2 162.5/650 Sinemet
237.5/950 Sinemet CR 50/200 1-1/2 75/300
Mirapex 0.125 mg 6 0.75
Mirapex 0.75
Permax 1 mg 2 2
Permax 3
Permax 0.25 mg 4 1
Prozac 20 mg 1 20
Prozac 20
Seroquel 25 mg 1 25
Seroquel 25
Zen Diazepam 2 mg 1-1/2 3 Diazepan 3
Advil 2 *
Eccotrin 2 *
* means as needed
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[log in to unmask] (ERVIN J MCCARTHY)
Phil, I will give you what information I have on Mirapex. I'm a new user of
drugs and only taking Mirapex. By doctors recommendation I am taking,
week 1 .125 mg at lunch
week 2 .125 mg three times a day at meals
week 3 .25 mg three times a day at meals--this is the point where I
a.m. at now without any noticeable results.
week 4 .25 mg to pills three times a day at meals
week 5 1.5 mg cut in half three times a day at meals
week 6 1.5 mg three times a day at meals
Phil, I have been asking for feedback on Mirapex for the past couple of
weeks and a.m. receiving a mixed bag of results.
I would appreciate any information you get. Best wishes
[log in to unmask]
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[log in to unmask] (Nina P. Brown)
I take 3 mg. of Mirapex 3x a day, along with Sinemet, Eldepryl and Symmetrel.
I was told by the Mirapex drug rep that it takes more than the amount your
wife is taking to have a therapeutic benefit.
I have discontinued taking 300 mg. of Tasmar (without any side effects other
than having to up my Sinemet dosage a little). I added the Symmetrel (100 mg.
2x a day)
when I stopped the Tasmar. Because of the Symmetrel, I am having less
dyskinesia now than I did before. I used to take it years ago, but quit
because of the side effects (leg edema) and I wanted to try
the new agonist at the time- Permax.
I intend to take Symmetrel for as long as possible now, because of the latest
reports that show it helps with dyskinesias.
I'd also appreciate seeing the spread sheet you made. Thanks and good luck.
Nina 57/12
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[log in to unmask] (Ronald F. Vetter
my dosage is low. only 0.25 mg four times per day. use 7 10/100 generic
carbi/levodopa also and half a selegiline hydrochloride mid-morn.
I would appreciate a copy in the oldest format (simplest .sylk perhaps). I
prefer to use my Clarisworks 4.5. only have an old Excel version.
you might be interested in some of the data and plots i have kept (not
recent) on my website.
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[log in to unmask]
I am taking 2mg of mirapex three times a day. My dr. increased it and I have
just
finished titrading up to that dosage. I was taking l.5mg three times a day.
which
is the maximum amount usually administered. But I was having weariing off.
I am not the first pattient to increase mirapex above the maximum accepted
dosage. I have been on mirapex since Sept 97. Edie Luther, 64/ 4l/44
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From: [log in to unmask] (James Berlis)
Hello
i read your message with interest. Being from the UK I havent heard of
Mirapex - is it new ? does it have another name ?
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From: [log in to unmask] (William R Nowell)
I would appreciate it if you would send me a copy of your Excel
spreadsheet. I have experienced weight gain and stomach bloating since I
started to take Mirapex. I have found that it has helped me, in spite of
the weight, especially in the dreaming and hallunicating areas. Thanks
in advance for the spreadsheet.
Bill 58/3
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[log in to unmask]
Hi, Phil: My husband takes 3.0 mg Mirapex every day. He also takes Parlodel
and Eldepryl. He can't take Sinemet -- gives him terrible diarrhea. He feels
the Mirapex has helped him, though his tremor is worse than when he took
Sinemet. However, his PD is not severe at this point, so his experience may
not mean much for you and your wife. Let me know if I can provide any further
information, and good luck. Delda White CG Bob 67/2
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[log in to unmask]
com (doublea)
My neuro started me on the same amount of Mirapex for one week, and then
increased the dosage to .25 3X /day and 1 week later increased it to 1.5mg
3X/day. Thsi is where I stopped at, and so far it seems to be working.
Also, if anyone has sent a message to me in the last 4 days or so, my hard
drive crashed, and I've lost your message.
Bob
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[log in to unmask]
In response to your request for Mirapex dosage:
I began Mirapex in 8/98 titrating slowly upward (by .25 mg/wk if I
remember) until I reached 4.5 mg/day (3 X 1.5 mg,) Dosing followed the
package insert to the letter. I'd never used an agonist before other than
Eldepryl and had some leg and ankle edema so wanted to try Tasmar. I
switched over and got an immediate "voltage increase". ln short, both drugs
were beneficial, both had bothersome side effects but Tasmar was the clear
winner. (I might note that I spent several months using both drugs with my
neuro/MDS' approval. I have always self-dosed and did so with both new
drugs as well after reviewing them with the doc, reading appropriate
literature, etc. I ultimately concluded I couldn't really find any benifit
to taking both Mirapex and Tasmar at the same time. My activities, sleep
patterns, meal times and diet were too variable to decide whether another
.25 mg. of Mirapex at the noon dose, for example, was necessary. I finally
dropped Mirapex completely and took between 400 and 600 mg. of Tasmar daily
depending on perceived need.) At the point where I discontinued Tasmar, I
had been successful in reducing my daily intake of Sinemet about 20% since
starting Mirapex 15 months earlier.
When I discontinued Tasmar (at doc's instructions due to the alleged
problems) I was rather cavalier about the change back to Mirapex. I don't
remember my change over formula, but it was based on the fact that I only
had a few Tasmar left, had to pay for any more myself and didn't want to
spend any more on it. I probably "crash titrated" in 3 days. The doc asked
me to hold Mirapex at .75 mg. 3 X daily and see if I could get along with
that reduced dose. The ensuing several weeks have not been pleasant. I'm
fairly young, strapping, active and can put up with offs with the best of
them--or so I thought. I've been reduced to the common denominator many
times since discontinuing Tasmar---that's the point where, at least for me,
I have to stop paying attention to anything but PD for the moment. I'm off
and can't get comfortable, standing is a chore, wa.lking is improbable and
I've just to wait it out. That didn't happen much with Tasmar. I've now
lost any ground I gained with Sinemet reduction and take 2 25/100 every
other waking hour.
I conclude l'll ultimately make peace with Mirapex and that I will never
again look at a drug change with such ambivalence.
Hope this helps.
Bob Bowling 52/10
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[log in to unmask]
Overland Park, KS
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[log in to unmask] (Sid Roberts)
Phil, for me Mirapex has been a "wonder" drug. I started taking it as soon
as it hit the market and titrated upward. I currently take 1 and 1/2 mg
three times a day for a total of four and a half mg daily.
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Sid Roberts 69/4 Youngstown,Ohio
