Mirapex

[Guest guest]

Hello Muriel,

I take Sinimet and Mirapex together. I don't think that Mirapex does

much for me. I tried to switch from Sinimet to Mirapex (upon my

neuologist's recommendation) but I found that Mirapex alone, even at

high dosages, just did not help very much at all. I understand that

it does for others.

I do not know anything about Permax, but your doctor can find out

about Permax+Mirapex if he/she wants to. Just because a doctor

doesn't have familiarity with a disorder doesn't mean that he/she

cannot gain familiarity with it by communicating with people who are

experienced in treating the condition. If your doctor is not willing

to make this effort in order to properly advise you and answer

questions, I personally would look for another doctor.

I don't know where you live and I realize in small towns, etc. there

may not be a medical professional experienced in treating RLS but I

would hope there are doctors who will go " the extra mile " and learn

about it.

Jane janegf@...>

---Muriel wrote:

>

>

>

> Just found a doctor who actually has heard of rls. I am just trying

> Mirapex, but now I am wondering, should

> I just stop the Permax completely or taper off while I am adjusting

to the

> Mirapex. Has anyone been on

> both? I know I could ask the doctors but they don't have the

experiences we

> do. So does any one have

> suggestions.

>

>

>

------------------------------------------------------------------------

>

[Guest guest]

I've been taking Mirapex since June 1998. Replaced Permax.

Increased in 0.125 mg increments to 0.5 mg/day taken in divided doses

during the evening. RLS symptoms ended completely. Decreased to a

total of 0.375 mg/day. I try to take 0.125 between 7:30-8:30; the

second 9:30 to 10:30 and the third around midnight or when I go to bed

(12:30 to 1:00). I was nearly completely free of RLS until recently,

but I often have trouble sleeping. I take Vicodin or Xanax at bedtime

to help, but I still don't sleep well. BUT-- at least I can rest

with the legs at peace.

However, I have been having some mild daytime and occasional evening

RLS over the last month or so. It seems to be getting worse. So I do

seem to be developing a tolerance to the Mirapex. I have resisted the

temptation to increase the dosage, as I fear that will only lead to

increased tolerance. But so far, I haven't experienced augmentation

like I did with Sinemet. I also became tolerant to Permax, but it

never worked as well as Mirapex and it made me sick.

So far, I am still feeling the best I have in many years thanks to the

Mirapex. But I doubt that it will will last forever.

--, 52, western NY

---Serdikof@... wrote:

>

> From: Serdikof@...

>

> Hi group,

> Could anyone who is taking mirapex send me information about

dosage and

> the effects of long term use (tolerance, augmentation, etc.) Until

we have

> more clinical studies, I think that we are our own best resources for

> information. I would appreciate any help you can offer. Thanks,

and sleep

> well? Kathy, 56, PA

>

>

>

------------------------------------------------------------------------

>

[Guest guest]

I've been taking Mirapex since June 1998. Replaced Permax.

Increased in 0.125 mg increments to 0.5 mg/day taken in divided doses

during the evening. RLS symptoms ended completely. Decreased to a

total of 0.375 mg/day. I try to take 0.125 between 7:30-8:30; the

second 9:30 to 10:30 and the third around midnight or when I go to bed

(12:30 to 1:00). I was nearly completely free of RLS until recently,

but I often have trouble sleeping. I take Vicodin or Xanax at bedtime

to help, but I still don't sleep well. BUT-- at least I can rest

with the legs at peace.

However, I have been having some mild daytime and occasional evening

RLS over the last month or so. It seems to be getting worse. So I do

seem to be developing a tolerance to the Mirapex. I have resisted the

temptation to increase the dosage, as I fear that will only lead to

increased tolerance. But so far, I haven't experienced augmentation

like I did with Sinemet. I also became tolerant to Permax, but it

never worked as well as Mirapex and it made me sick.

So far, I am still feeling the best I have in many years thanks to the

Mirapex. But I doubt that it will will last forever.

--, 52, western NY

---Serdikof@... wrote:

>

> From: Serdikof@...

>

> Hi group,

> Could anyone who is taking mirapex send me information about

dosage and

> the effects of long term use (tolerance, augmentation, etc.) Until

we have

> more clinical studies, I think that we are our own best resources for

> information. I would appreciate any help you can offer. Thanks,

and sleep

> well? Kathy, 56, PA

>

>

>

------------------------------------------------------------------------

>

[Guest guest]

Just a reminder to those who find Mirapex tapering off in effectiveness.

Dr. Levin had this experience several times and says this is quite common. If

it stops working for you, it seems to be worth using something else for a week

or two and then giving it another try.....since it seems to be so good when it

is working.

Just a thought.....

Connie, almost 62, MD

[Guest guest]

>

>

>Hi all

>For all those who are taking mirapex. I am taking .375 mg at night

>before bed (I have PLMD) and it worked great in the beginning and it

>seemed to go away some what as time went by so I talked to my doctor and

>he raised it to .5 mg I will try it tonight. I would like to know what

>other people think of Mirapex, what is your dose?

>

>Hi Rodney,

I also had a horrible reaction to Sinemet. Rebound and augmentation were

terrible. I am now taking mirapex (.25mg) and it is had been very

effective. I have had increased rls during the day, but I can live with

that. I hope that this is a long term solution. Don't we all. Good luck,

Kathy, 56 PA

>

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

>We have a new web site!

>http://www.onelist.com

>Onelist: The leading provider of free email community services

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

>This forum is for support only. The information posted to this List is for

support purposes

>and is not intended to replace the examination, diagnosis and treatment of

a licensed

>physician and no such claims are inferred.

>

[Guest guest]

In a message dated 3/10/99 1:09:21 AM !!!First Boot!!!, jrobbins@...

writes:

<< Hal White

seems to be having a tough time with Mirapex and just when I was going to

list it as my next try after the Permax wears off. >>

When Mirapex first became the " newest " treatment for RLS, I wanted it too!

I went to my sleep doc " demanding " Mirapex. Fortunately, he stalled and

hee&hawed about it. I am now glad that I am still taking Permax and I did not

make the switch. But then again, the Permax is working nicely for me (for

now). So, I guess I won't fix something that ain't broke, if you know what I

mean.

RAINBOWPED@...

[Guest guest]

In a message dated 3/10/99 1:09:21 AM !!!First Boot!!!, jrobbins@...

writes:

<< Hal White

seems to be having a tough time with Mirapex and just when I was going to

list it as my next try after the Permax wears off. >>

When Mirapex first became the " newest " treatment for RLS, I wanted it too!

I went to my sleep doc " demanding " Mirapex. Fortunately, he stalled and

hee&hawed about it. I am now glad that I am still taking Permax and I did not

make the switch. But then again, the Permax is working nicely for me (for

now). So, I guess I won't fix something that ain't broke, if you know what I

mean.

RAINBOWPED@...

[Guest guest]

In a message dated 3/10/99 1:09:21 AM !!!First Boot!!!, jrobbins@...

writes:

<< Hal White

seems to be having a tough time with Mirapex and just when I was going to

list it as my next try after the Permax wears off. >>

When Mirapex first became the " newest " treatment for RLS, I wanted it too!

I went to my sleep doc " demanding " Mirapex. Fortunately, he stalled and

hee&hawed about it. I am now glad that I am still taking Permax and I did not

make the switch. But then again, the Permax is working nicely for me (for

now). So, I guess I won't fix something that ain't broke, if you know what I

mean.

RAINBOWPED@...

[Guest guest]

Hi Kathy,

I've been taking Mirapex for a year now, and these are the side effects that

I have experienced, but they are intermittent.

Sleep disruption

Headache

Post nasal drip

Frequent urination

Loss of libido

Increased appetite

Stiff neck muscles

Otherwise, the Mirapex has been about 80% effective for my RLS. I notice

that if I take my Mirapex at 6:00 PM, or thereabout, I sleep better. Hope

all is well with everyone. Sweet dreams to all, Elaine, Malibu, Pouring rain

and 54 degrees. BURRRR!

[Guest guest]

Hi,

It is the pack rat again; below is my file on Mirapex and Requip. One of the

wonderful things about the RLS Cyberspace Support Group is you can instantly

reach several hundred RLS sufferers for their experience on medications, side

effects, their opinion, etc.

Several months ago, my mother was trying to decide on whether to try Mirapex

or Requip. She has Parkinson's Disease + RLS and had been put on Tasmar by

her neurologist. She woke up one morning to read in the newspaper many taking

it were having liver failure. A call to him, he said stop taking it which

necessitated another dopamine agonist. So many responded quickly to my plea

for help and information. We are both so grateful to each and everyone you to

this day for being here!

Insomnia is a common side effect with Mirapex. However, many have solved

this, including my Mother, by taking it earlier in the evening. In her case,

she takes 3 of the 1 mg a day (remember, she also has Parkinsons and RLS -- I

think the two are unrelated), and takes the last one at 6:00 PM and generally

goes to bed around midnight.

Recently, Mom stopped taking the Mirapex for a short time when she had the

CRUD, the more virulent form of the cold going around, as it makes her head a

little bit stuffy. She thought until she would do this just until she got rid

of the cold. Her RLS symptoms came back with a vengeance.

Mirapex is helping both her Parkinson and RLS symptoms all in one. Mother's

ferritin level had also been low previously and she admitted she had let up

on eating iron rich foods and went back to better habits on this also.

Below is my file and all the wonderful responses trying to help my mother at

the time she was about to go ask for a prescription for either Requip or

Mirapex.

Barbara

P. S. Save this for the next time you get impatient with our support group!

Date: 12/30/98 5:55:47 PM Eastern Standard Time

Tried Requip for only one week. Made my RLS very bad. I also have PLMD. My

entire body including my head started twitching uncontrollably on 1 Requip

pill. Had to quit. Now I take Sinemet for the PLMD and 1mg Klonopin for the

RLS. Pam

HI BARABARA:

I HAVE BEEN TAKING MIRAPEX WITH GREAT SUCCESS FOR 6 MONTHS OF NUMEROUS OTHER

MEDS I TAKE IT WITH KLONOPIN THE REQUIP WAS A DISASTER AND SENT MY LEGS IN TO

A FRENZY. HOPE THIS SMALL INFO HELPS YOUR MOM.

Barbara,

I hope I got your name right. I have been taking Requip since probably

last spring. I have had wonderful results with it. My RLS is severe and I

have tried many things. I had way too much rebound effect from Sinemet and

Permax made me sick. I also tried the Tasmar along with the Sinemet, but it

did not work. The only problem I have had with the Requip is that I get real

slepy right after I take the first dose of the day, which for me is right

after lunch. I understand that not many people experience this (so I'm told -

I'd like to hear from others).

Also, if I can manage to stay real busy right after that first dose,

sometimes (not always) I don't get so sleepy. the latter doses however do not

bother me. I take 3 x .5mg 3 x a day. Of course I did not start off that

high, but I've been at that dosage for quite some time now. I can't think of

anything else to tell you about it. I hope I have been of some help. Please

feel free to contact me as often as you wish if you have any questions at

all. I applaud what you are trying to do for your mother and I wish you the

best of luck. Good luck & God bless, Ninette

Hi Barbara!

I started taking Requip about a month ago and was doing fine taking it 3

times a day with meals until 2 nights ago when my legs started to jump again.

I got up after an hour and took another pill (.25mg) and went back to sleep.

I'm seeing a new neurologist next Monday and I'm trying to figure out what

to do if the increased dosage doesn't work. I'll

keep your fingers crossed that it helps your mom. I did have some initial

side effects.... back ache, upset stomach, itching. Hope this helps!

Hi, I did not find that permax did much for me either, sinimet worked but too

much and you have other problems. The doctor has me on 3 mirapex a day and I

feel better if I take less I felt like my arms and legs ached more, but each

person is so different and you just are desperate to try anything that give

some relief. Good Luck and I have been there with my Mother, so understand

what you are going through. Blanche

Subj: Requip (ropinirole)

Date: 2/8/99 2:46:21 AM Eastern Standard Time

From: jruppen@... ( & Ruppenthal)

I've replied individually to some of you regarding Requip (ropinirole)

....this is a relatiely new dopamine agonist, suggested by my neurologist,

used to treat Parkinsons Disease and effective for some RLS sufferers. I've

been on it for several months with more relief than the numerous other meds

tried, with fewer undesirable side effects.

My current dosage is two tabs of .25mgm an hour before bedtime along

with one tab of Tylenol and Codeine...and about 1:00 AM when symptoms

reappear, I take anothr one .25 mgm of the Requip plus another Tylenol and

Codeine. At the onset of treatment I was able to get by with a smaller dose

of Requip, but like some other drugs, I've had to increase the dose slightly

for relief, due to tolerance. I'm averaging 6-8 hrs of sleep a night in

comparison to 2 before! I've tried using it in the daytime, however,

especially when traveling, and haven't found a suitable dosage. It's either

too little or too much!

Will let you know if I work this out. Windtree/, 60, Wis

From: ninettecampbell@... (Ninette )

Jeanne, Hal and those interested,

I take Requip (Jeanne asked for suggestions other than Mirapex) and

have had excellent results. I'm certainly not suggesting that anyone should

take this, just

relating my experience. Questions? I'll be happy to answer what I can.

Ninette - 51 - TN

Barbara,

I also had a significant improvement when I began taking B12 shots. However,

it didn't last, only for about 2 months. My dr. was also puzzled by this. I

am convinced there is some kind of connection since one known cause of rls is

anemia. But I am probably not qualified to make that assumption. I do know

it was not a placebo effect because I didn't start the B12 shots for rls. I

had other dificiency symptoms i.e.; frequent canker sores. I do not

understand why it had an effect on the rls only when I was building up on the

B12 stores. Hope this helps someone out there. Thanks, Chris

I have been taking mirapex .125mg at about 8:00 at night for about 3 months.

It has been wonderful! I was on sinement but the augmentation was so bad

that I could hardly sit still during the day and sometimes woke up very early

with terrible RLS. Was nice to sleep at night but there are times one has to

sit still during the day!ie; meetings, riding in a car, etc. So I usually

had to take hydrocordone for those times. With the mirapex that is all I ever

have to take. It is so good it makes me nervous! Because other things have

worked for awhile and then guit. I too am B12 deficient and take shots

monthly. My dr. thought I might have to take a larger dose of mirapex-.25

but so far this works fine. I have no side effects. Hope this helps! God

bless. Chris

From: wildthang27@... (Debbie A Rupp)

Sorry to hear about your Mom. I hope this is not to late for you. My Mom is

82 and takes Mirapex. She has been taking it for several months now and has

severe RLS/PLMD. THe Mirapex has helped her tremendously, she still has

occasional nights where it doesn't seem to work, but for the most part she is

much more comfortable and able to deal with life better. Hope this helps.

Good luck to your Mom. Debbie

I am one of the group who has been taking Mirapex since June with very good

results. I do have insomnia from it, but I don't mind being awake too much

when I can at least relax and lie in bed with no RLS. I take Vicodin that

helps me sleep most nights. I generally feel better than I have for years.

I too have gone through Sinemet (rebound and augmentation) and Permax

(nausea) and am very happy with Mirapex.

Perhaps of more significance to your mother's case is a comment my GP made

during my last visit. He called Mirapex a " good drug " and said that his

Parkinson's patients are doing well with it also.

I have actually decreased my dosage from 0.5 mg to 0.375 mg per day. For my

RLS I take it in divided doses during the evening. I recently started

starting earlier to see if it helps the insomnia. It's too early to tell if

that helps.

Good luck with your Mum.--, 52, Western NY state.

Barbara--I took Sinemet and almost immediately, like the next day, started

having rebound during the day in my arms even when I would just sit down in

the recliner. Took Mirapex for a week or so and got a urinary tract

infection. Stopped taking it for about two weeks and went back to the

Sinemet or Darvocet and Klonipin. Two weeks later I tried the mirapex again.

Got another uninary tract infection. After the Sinemet became so

intolerable and I wanted to quit taking the Darvocet, I began the Mirapex

again, .125 to .25 at bedtime with two capsules of cranberry which I got at

the health food store. I went down to one capsule when I didn't have any

symptoms for about a week and now only take one capsule about two or three

times a week. Still take the Mirapex. Have been doing this for about a

month now and no sign of urinary tract infection.

Ferritin Levels? Hmmm. Have I missed something? Could this be a cause of

RLS? I'll ask my Neuro about it if it helped your mom.

I have a friend with Parkinsons. He takes Mirapex, too, and is doing much

better now since taking it now for about six months. I don't know what he

was taking before. We share stories about the Mirapex. I feel for him and

feel blessed to *only* have RLS and not Parkinsons. *My* mother used to tell

me when she was living, " Honey, be thankful for what we have because there is

always someone that is worse off than we are. "

I hope your mother does well and gets the medication that is right for her.

Take care of her. Lindy B. (49) in Southeast Texas

I to am taking sinemet for restless leg, along with permax, 0.25mg at bedtime

with good success. I have not heard of the other drugs u have mentioned. I

have also found that when my potassiun gets high I'm ready to climb the walls

with my legs. Good luck with your mom.

Dear Barbara:

I've been on Mirapex for 10 months now, and my symptoms are 80% relieved. I

take one at about 6:00 PM, as it did cause insomnia when I take them later.

I am a recovering addict, so I cannot take sleeping pills, or any pain

medications at all. So for me, this had to work, or I was in big trouble!

Being the age that your Mother is, she should not be on any sedatives if she

can help it.

Mirapex did stop working for a few weeks. I had to up my dose to two a

night, one in the middle of the night. But it started working like a charm

again, and I am back down to one again. I've had no symptoms during the day,

as I did with Sinimet. For the first two weeks on Mirapex, I experienced

frequent urination, dry mouth, and increased appetite. I had aching behind

my knees. But then, they left me. And I have not felt better in 15 years...

I take 0.125 mgs. The prescription is written as such, Take one tablet to

start. May increase to 1 tablet three times a day. I increased after several

weeks to two. Good Luck Barbara, God Bless your Mom.

Don't know if this will be of any help but I have been taking Mirapex since

May 1998 and hve found tremendous relief. I am taking 0.125mg 2 times a day.

One in the morning and one at night before bed. I still do not sleep through

the night but do not have to get up and wlk around to relieve discomfort. I

would also have a problem at work and that is gone. Would be glad to answer

any questions you may have that might help your mother.

Well I have had some stiffness in my legs at times in the past but not

recently. I have had sleep problems for a long time including sleep walking

which improved as my anemia did. Nothing else that I could attribute directly

to Mirapex. Good Luck tomorrow. Sonya White NY

Dear Barbara,

i have been taking mirapex about a month now. I did have problems sleeping

the first tried mirapex, I was taking all 3 pills at night. I now take then 1

pill three times a day and have less problems sleeping but do have some

muscle soreness I think is from the mirapex. I stopped taking it a while and

had less muscle aches, started back and the soreness returned. I hope this

will help your mother. 37 Arkansas

Hi, I have been taking Mirapex for 3 months and I feel for me it has been

much better then permax, I also take tylenol w/coedine#3 and a 1/2 tab of

sinemet. I have had the RLS most of my life, my Mom had it and mine is a case

where it's there every night. and becomes painful, I think you have to try it

and see how she does, let me know if you want more information. Good Luck

Blanche Fox

I tried Mirapex after Sinemet started becoming ineffective and an added dose

only made things much worse. I built my dose of Mirapex up as prescribed,

1-2 weeks of .125mg.; 1-2 weeks of same twice/day; 1-2 weeks of same three

times a day. No relief and boy did I get sick!!!

Yuk! I'm now trying 2 darvocets at night with another earlier in the day, if

needed. Better, but I still pound on my legs before the evening is over.

Subj: Mirapex/Headaches

Date: 3/17/99 2:25:01 AM Eastern Standard Time

From: Miklinkat@...

To: rlssupport (AT) onelist (DOT) com

From: Miklinkat@...

I couldn't wait till mirapex came on the market. I started taking 1/2 of the

lowest dose in the early evening. I started having a terrible headache at

about 4pm every day. I thought it was the mirapex wearing off or blood level

getting low. I tried adding another 1/2 tablet of it and the headaches

became 24-7 (as the newest phrase states) and went away when I stopped the

mirapex all together. So now it's back to Sinemet. I know it works great for

lots of people but I couldn't tolerate it. I was so hoping. . . Sweet Dreams

to all. O, 51, Medford, Oregon

[Guest guest]

----------

>

> To: Serdikof Serdikof@...>

> Subject: Re: Mirapex

> Date: Tuesday, April 06, 1999 6:53 PM

>

> I could not tolerate Mirapex because of the insomnia and currently take

no

> prescription meds. Several people in this group have reported similar

> results. I have heard (Southern Calif RLS Support Group Physician) that

> Requip, which is in the same class of meds, may be tolerated better by

some

> but I have not heard of many in this group using Requip. Some

individuals

> report using Ambien, Xanax, etc. to counter the insomnia of the Mirapex.

> Personally I don't want to do this but would like to try to find an

> alternative to the MIrapex. Let me know what neurologist recommends.

> Thanks.

>

> , age 50 (Houston)

>

> ----------

>

> To: RLS support rlssupport (AT) onelist (DOT) com>

> Subject: Mirapex

> Date: Tuesday, April 06, 1999 1:30 PM

>

> I have been taking mirapex for rls for about six months with great

success

> .. However, my insomnia has worsened since taking the drug. I need to

know

> whether this is a side effect of the mirapex, or may have other causes

> (diet, change of seasons, etc.). I know that many people in this group

are

> taking mirapex, and I would very much appreciate your experience with it

> and with insomnia. I see my neurologist next week and need to be armed

> with information. Thank you all. Kathy, 56, PA

>

[Guest guest]

Kathy,

Have been taking Mirapex for a year, and insomnia seems to be a side

effect for me. Despite this, It still helps the most,overall, of

anything else I've tried.

ne, 59, Lawrenceville, NJ

___________________________________________________________________

You don't need to buy Internet access to use free Internet e-mail.

Get completely free e-mail from Juno at http://www.juno.com/getjuno.html

or call Juno at (800) 654-JUNO [654-5866]

[Guest guest]

Just found a doctor who actually has heard of rls. I am just trying

Mirapex, but now I am wondering, should

I just stop the Permax completely or taper off while I am adjusting to the

Mirapex. Has anyone been on

both? I know I could ask the doctors but they don't have the experiences we

do. So does any one have

suggestions.