My doctor put me on Pramipexole 0.5mg - Restless Legs Syn...

Restless Legs Syndrome

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My doctor put me on Pramipexole 0.5mg

Clarence1936 profile image
11 Replies

I take one capsule at 7:30 and go to bed at 10:30 Go right to sleep within RLS

I have done this for the last three nights. Slept all night (with several bathroom times during the night)

Have had not one twitch.

Just hope it holds out I have had RLS for at least 40 years and have tried everything that I have heard of.

This may not work in the future but it is the first time anything has worked in the past.

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Clarence1936 profile image
Clarence1936
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11 Replies
LotteM profile image
LotteM

Very happy for you that you finally get some sleep. We all on hete can relate!

However. Isn't there always one? However, two things. Firstly, pramipexole (.together with ropinirole and Neupro, all dopamine agonists DAs) is no longer a first option to treat RLS with medicines. Please read the recently updated guidelines for the treatment of RLS and discuss these with your doctor: mayoclinicproceedings.org/a...

Secondly, your dose of pramipexole is 4 times the starting dose. And if I am correct 6 times tue starting dose, or 0.75mg is the maximum recommended dose. Now this is relevant, as the reason pramipexole and other DAs are no longer preferred medicines for RLS is that they have a major complication, and that is the high risk of paradoxically worsening the RLS symptoms. This risk increases with dose and length of time taken. Hence the need to start low and stay as low as possible.

Or even better, check put other things first. Such as other conditions and medicines that may worsen RLS, iron status and if medical treatment is started, gabapentin is usually now the first recommended option.

Please read the guidelines and discuss. And do some reading on this forum. You'll learn a lot quickly. Come back if you want to ask more questions etc. Good luck.

Madlegs1 profile image
Madlegs1 in reply toLotteM

0.25 mg is the max recommended dose for Pramipexol for RLS.There are different ways of measurement of Prami in different countries, so that may be different for the USA.

But you are way over the correct dose.

See the other answers.

And-- good luck.

LotteM profile image
LotteM in reply toMadlegs1

Thanks Madlegs re the max dose for pramipexole. Take heed, Clarence

Clarence1936 profile image
Clarence1936 in reply toLotteM

I will ask my doctors about 0.25mg of Pram

Thea2014 profile image
Thea2014 in reply toClarence1936

Hi Clarence I have suffered for many years been taking same tablets only 50 mg a day someone mentioned gabapentin so I friend of mine gave me some of his I took one last night and it’s the first time in a very long time that I have had more. than 6 hours sleep usually 2 hours so I will be speaking with consultant about changing good luck to you

SueJohnson profile image
SueJohnson in reply toThea2014

Let me give you some more detailed advice: To come off pramipexole, reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end.. But in the long run, you will be glad you came off it. On the gabapentin, start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks.

Clarence1936 profile image
Clarence1936 in reply toSueJohnson

I think my doctor would like to know your qualifications. I am not going to go in to my doctor and tell her some lady in England said that she did not know what she was talking about. Lets face it, nothing works for everyone and at best for a short time.

LotteM profile image
LotteM in reply toClarence1936

Clarence, Sur bases her advises on the updated guidelines fir the treatment of RLS, published in the Mayo Clinic Proceedings of 2021. She can be a bit strict and direct, but I am sure it is meant to make you observe and think and to inform you. Very very many people on this forum have suffered because their doctors didn't know enough about the treatment of RLS.

As the cause of RLS is unknown (likely brain iron deficiency, but how does that originate?) treatments in the last 20-30years have been kind of trial and error. Eg the DAs have been tested, but mainly short term for a lifelong condition. However, already some 10-15years if not longer ago it became clear that in the longer term DAs worsen the RLS for some 70-80% of people that use it. And the withdrawal is hellish in that case. Most people on this forum have experienced that.

THAT is why many people on this forum warn against DAs. Some say never to start, but I am one to say use wisely. Try other things first and if you start, stay low and do not increase when is start to fail.

So, no, we are not medically qualified like your doctor, but we are kind of patient experts.

And you are right, only you and your doctor can observe and decide on YOUR situation.

We just try to share experience and information, as much as possible from credible sources.

So please Clarence, be very careful with the pramipexole. And, for all medicines it is wise to find the lowest effective dose.

TeddiJ profile image
TeddiJ in reply toClarence1936

Wow, Clarence...your doctor is the one who needs to prove her qualifications when it comes to her experience with RLS.

If you feel this way, don't waste the time of highly experienced people on this forum who have gone way out of their way to share their painfully acquired RLS knowledge with you.

EVERYONE on here knows that PRAM is just another DA that will prolong your hell in the end.

A 10 year old can google to check the facts selflessly shared with you above. Your doctor hasn't bothered to do even a simple check of the latest research. Nor have you.

Do not insult the experts on this forum.

SueJohnson profile image
SueJohnson in reply toClarence1936

Read the Mayo Clinic Updated Algorithm on RLS which discusses dopamine agonists like pramipexole and how to come off them and the latest guidelines on RLS treatment and refer your doctor to it so you don't have to tell her some lady in the US said that😀

Https://mayoclinicproceedings.org/a...

SueJohnson profile image
SueJohnson

At one point you were going to ask your doctor about gabapentin. What happened with that?

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