RLS relief is here.!: my doctor is an... - Restless Legs Syn...

Restless Legs Syndrome

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RLS relief is here.!

Kailua808 profile image
12 Replies

my doctor is an assistant professor at the University of and she handles movement disorders which RLS is.

For the last year I’ve been on 1.5 mg of Pramipexole, one in the morning and one at and also 500 mg of Keppra which I take one in the morning one at night as well. My RLS 00% left my body and I haven’t had bouts or augmented or anything which I am used from all the other trials of meds.

your life will change. It’s an absolute you.🥰

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Kailua808 profile image
Kailua808
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12 Replies
Madlegs1 profile image
Madlegs1

I sincerely hope nobody follows your advice.

It is positively dangerous.

I'm glad it is working well for you, but ,for most people Pramipexol is a most awful medication.

True-- it seems absolutely magical at first.. but then, slowly and inevitably you will need to up the dose to get the same relief. Until you are screaming in absolute agony with full body RLS.

At that point you will need to go through horrendous withdrawal sequences to get off the drug.

Now--- this may well not be your story in a few months/ years time--- and I sincerely hope it will not be your experience.

But it is a story that we get on here constantly -- at least every week.

My message is not so much to you--- but to those who may listen to your advice.

Stay away from Pramipexol, Ropinerol, Rotigotine and Neupro and any other of those that misguided experts may inflict on anyone .

Good luck.

And I never even touched on Augmentation!😆💚

SueJohnson profile image
SueJohnson

Your assistant professor was wrong and is badly out of date. You were on pregabalin and came off it. Instead you have jumped into the fire. Up to 70% of people on a dopamine agonist (DA) which pramipexole, ropinirole and Neupro are will suffer from augmentation and some experts believe that everyone will suffer from it. and the longer you are on it the harder it will be to come off it which as Madlegs1 said will horrible - some say it is worse than coming off heroin.

There are other options like dipyridamole and low dose opioids.

I'm sure you won't listen to me or others but when the time comes that you do suffer from augmentation make a post and we can advise you on how to come off it.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it at Https://mayoclinicproceedings.org/a...

Also check out AASM Guidelines jcsm.aasm.org/doi/pdf/10.56...

RLS-UK Https://rls-uk.org

relacshealth.com/

Claire_lc profile image
Claire_lc

SueJohnson and Madlegs1 are right. Many of us on this forum have gone down the dopamine agonist route and lived to regret it. Most of us were in denial until the augmentation became intolerable.

They work like a dream - until they don't. And then you will wish you'd never listened to the medical 'experts'. In this case the patients really do know more than most doctors.

LotteM profile image
LotteM

I second the others, Madlegs, Sue, claire. And I suspect there will be more along the same line.

1.5mg is THREE times the maximum dose for pramipexole when prescribed for RLS. Twice a day that dose, hence SIX times the max dose. No wonder (?) it helps, but I fear not for long.

Btw, pramipexole=Mirapex or Sifrol.

Joolsg profile image
Joolsg

Not a very good or knowledgeable assistant professor. She needs to go back to study. That is very dangerous advice. Dopamine agonists are now relegated to 'end of life scenarios' by the world's top experts.

I suggest you show the asst prof the latest research and treatment as set out in the Mayo Clinic Algorithm and the new AASM.

As you are on a criminally high dose, you will start to experience augmentation soon so do your own research and listen to the advice of everyone on here.

We all learned the hard way that our doctors were negligently out of date on best treatment for RLS.

ELLSBELLS profile image
ELLSBELLS

I could have cried when I read your post. So many of us have been in your position and oh! the relief when prescribed a dopamine agonist that gave us total relief and a full night's sleep. You will in time feel differently when compulsive behaviours appear or even more likely augmentation when restless legs reappears, in my case earlier in the day and in parts of my body never before affected. Please read all the posts on augmentation, withdrawal from dopamine agonists and alternative treatments. Wishing you luck in finding a treatment with fewer side effects.

Mongolia2020 profile image
Mongolia2020

I agree with the others who have replied here.

Because these drugs work so well to begin with, people are so happy to have found them and want to tell others. I was one of them.

Now I know better, and would not wish the experience of augmentation and withdrawal off dopamine agonists on my worst enemy.

I actually thought I might not live to see another birthday ( I’m 61). I am through the worst, but sadly, dopamine agonists have caused damage and I don’t know if I will fully recover.

So, for those wondering who is right, please listen to the very knowledgeable, very experienced experts on this site, who have first hand experience of living with RLS and are trying to help you, me and all those whose journey with rls is so difficult.

MrVimes profile image
MrVimes

If I could live my life again and get to change just ONE thing - it would be to not take one single Pramepexol pill. I am sincere with this statement.

Simkin profile image
Simkin

Having been on pramipexole & gone through the nightmare of coming off it I agree with everything that has been said here.

Merny5 profile image
Merny5

Ditto to all comments above! I’m sure you are discouraged to read all of these responses, because you are overjoyed to be symptom free. I’m sorry for that but this is true. So many of us have suffered augmentation and have permanent damage from it. I hope that you take in these comments seriously and NEVER ever increase your dosage. Believe us!

DicCarlson profile image
DicCarlson

OMG - Just look at the number of "likes" on each reply - watch for the wolf in sheep's clothing!

Huntingleroy profile image
Huntingleroy

Dopamine Agonists are pure evil and nearly cost me my life . I think I tried everyone and yes they do work until they dont .

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