Hi, I have RLS and it is getting worse and worse. I have had it at night for a while now, but now i have it during the day too. its really driving me insane! i have tried clonopin, xanax, depakote, ambien and lunesta.. nothing has worked... i am going on permax and i am praying it will work.. has anyone tried it? and if so how long does it take to kick in?
Thanks.
Has anyone tired permax (pergolide) ?
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Anonymous
Pergolide
I have longstanding restless leg syndrome which began when I was a child. I am now in my 60s. I would categorize it in the severe range, symptoms occur daily and when untreated, interfere with sleep and rest severely. Untreated it usually takes 5 hours, 3 showers, endless walking, and some computer time (some people play video games, I hear) to get to sleep.
I tried Pergolide once because the neurologist was under the mistaken impression (he told me this later) that Pergolide had a long duration of effectiveness.
I had all the negative effects of this ergatomine-based drug immediately but the most frightening was waking up in the middle of the night being unable to breathe. I never did get to take enough of it to find out if it would work for me.
I have been taking Pramipexole DIHCL 0.25 mg (1 or 2 tablets about an hour to 1 1/2 before bedtime) for about 5 years. I find it highly effective with absolutely no side-effects.
Pramipexole is now in the recommended list of treatments to consider. I started taking it after hearing a piece about it on CNN. Until I could get to a physician who would agree to prescribe it (a 10-month wait for a specialist), I tried some of the tablets that my husband was using to manage his Parkinsons. Thanks to this website I knew the dosage range. I was desparate and, of course, would caution everyone from self-medicating from someone else's prescription.
It is important to keep trying to find the best treatment for you.
That reminds me, I have almost missed the window of time to get the best effect out of my evening dose of medication. Must go to take it.
I tried Pergolide once because the neurologist was under the mistaken impression (he told me this later) that Pergolide had a long duration of effectiveness.
I had all the negative effects of this ergatomine-based drug immediately but the most frightening was waking up in the middle of the night being unable to breathe. I never did get to take enough of it to find out if it would work for me.
I have been taking Pramipexole DIHCL 0.25 mg (1 or 2 tablets about an hour to 1 1/2 before bedtime) for about 5 years. I find it highly effective with absolutely no side-effects.
Pramipexole is now in the recommended list of treatments to consider. I started taking it after hearing a piece about it on CNN. Until I could get to a physician who would agree to prescribe it (a 10-month wait for a specialist), I tried some of the tablets that my husband was using to manage his Parkinsons. Thanks to this website I knew the dosage range. I was desparate and, of course, would caution everyone from self-medicating from someone else's prescription.
It is important to keep trying to find the best treatment for you.
That reminds me, I have almost missed the window of time to get the best effect out of my evening dose of medication. Must go to take it.
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Anonymous
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Butterfoot
- Posts: 43
- Joined: Fri Apr 15, 2005 3:11 am
- Location: Kissimmee, FL
- Contact:
Pergolide
Hi Pixie711
I'm currently on Pergolide - (2) .05 mg nightly with (1) 200 mg Sinemet each night. The doc started me on Sinemet only this spring when I finally saw a Neuro after finding out it was RLS that was making my arms and legs go nutso. Within a month we had to add the Pergolide, beginning with 1/night and increasing the dosage weekly until the symptoms subsided. 2/night with the Sinemet seemed to work. I was getting some pretty good sleep. I'm not sure now if I need to up the dosage another pill or not. Had a horrible night last weekend, but had also run out of pain meds which I take daily (tho not at night), and had also taken a Dayquill tablet in the afternoon for congestion, not even thinking. I was miserable!
Well, got my pain meds Monday and threw away the Dayquill. All was well until today. Tonight I'm having problems again. Not like last week, but I can feel the buzzing and my legs ache. So, I'll take a 3rd Pergolide for a week and see what happens. I believe the Neuro said I could increase the dosage to as many as 5 Pergolide per night by 1/wk increments. Of course there's the concern about the heart valve issues with Pergolide, but the Neuro says the dosage would have to be quite a bit higher to cause a problem. More of a dosage that Parkinsons sufferers would take.
As you'll read in all the posts, it just takes experimenting until you and your doc find what works for you. Hope this helps and hope you find relief.
Blessings to you!
I'm currently on Pergolide - (2) .05 mg nightly with (1) 200 mg Sinemet each night. The doc started me on Sinemet only this spring when I finally saw a Neuro after finding out it was RLS that was making my arms and legs go nutso. Within a month we had to add the Pergolide, beginning with 1/night and increasing the dosage weekly until the symptoms subsided. 2/night with the Sinemet seemed to work. I was getting some pretty good sleep. I'm not sure now if I need to up the dosage another pill or not. Had a horrible night last weekend, but had also run out of pain meds which I take daily (tho not at night), and had also taken a Dayquill tablet in the afternoon for congestion, not even thinking. I was miserable!
Well, got my pain meds Monday and threw away the Dayquill. All was well until today. Tonight I'm having problems again. Not like last week, but I can feel the buzzing and my legs ache. So, I'll take a 3rd Pergolide for a week and see what happens. I believe the Neuro said I could increase the dosage to as many as 5 Pergolide per night by 1/wk increments. Of course there's the concern about the heart valve issues with Pergolide, but the Neuro says the dosage would have to be quite a bit higher to cause a problem. More of a dosage that Parkinsons sufferers would take.
As you'll read in all the posts, it just takes experimenting until you and your doc find what works for you. Hope this helps and hope you find relief.
Blessings to you!
May only good come your way.
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ViewsAskew
- Moderator
- Posts: 16583
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Pixie, I haven't used Permax. Seems we have more Mirapex and Requip users here. With most DAs, seems that people have the most luck when they start with a small amount - maybe even smaller than the doctor says, then increase slowly in small increments. Many people need less than the doctor thinks they might. Of course, sometimes people need more. I don't what the 'average' dose of Permax is.
There is some good information about drugs in general on the Internet. If you go to the New to RLS? section of this board, then open either of the 'sticky' posts, you'll find many great links to great info. In the Welcome sticky, if you click on the Links to Educate and Inform, you'll find a post that has many links about drugs. The So Cal Support group and the We Move site both have good information about the dopamine agonists and drugs in general.
Hope that it is working for you by now.
Ann
There is some good information about drugs in general on the Internet. If you go to the New to RLS? section of this board, then open either of the 'sticky' posts, you'll find many great links to great info. In the Welcome sticky, if you click on the Links to Educate and Inform, you'll find a post that has many links about drugs. The So Cal Support group and the We Move site both have good information about the dopamine agonists and drugs in general.
Hope that it is working for you by now.
Ann
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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SandyL
PerMax
I have been using Per Max for the past 2 years. I am taking .25 twice a day. I started out by getting rls infrequently, usually when I had to sit for long periods of time OR when I wore something that was very constricting either around the waist or just below the hips.
My neurologist did say if it quit working for me we could try something else. I am at that stage now. Either we are going to have to increase to more times per day, I have a sit at the desk job that make the 'jeans' I wear constrict below the hip... and it starts the symptoms of RLS... OR I am going to have to go to something different.
That of course is my reason that I was checking RLS on the Internet and found this wealth of information!
I will let you know the outcome.
SandyL
My neurologist did say if it quit working for me we could try something else. I am at that stage now. Either we are going to have to increase to more times per day, I have a sit at the desk job that make the 'jeans' I wear constrict below the hip... and it starts the symptoms of RLS... OR I am going to have to go to something different.
That of course is my reason that I was checking RLS on the Internet and found this wealth of information!
I will let you know the outcome.
SandyL
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KATHYY
PREMAX
Hello to all, so sorry that you have rls....i know how ya feel. I have been taking premax for years now and it for me has worked great...but in the last year the dose has had to be increased to the point that now i have to change meds....trying requip now....which works but for a short time and for the last week have only gotten a few hours sleep...so please forgive the misspelling here....i can not think very clearly at the moment.....
just wanted to tell ya that for me....for many years....premax saved my life....wish it still worked for me as i am afraid i may not find a new drug to work.
good luck to you....and good sleep
just wanted to tell ya that for me....for many years....premax saved my life....wish it still worked for me as i am afraid i may not find a new drug to work.
good luck to you....and good sleep