My first night on mirapex: Hello... - Restless Legs Syn...

Restless Legs Syndrome
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My first night on mirapex

sarah19902
sarah19902
71 Replies

Hello everyone,

Thank you for your help throughout this site.

My neurologist has diagnosed me with RLS. My main symptoms are physical twitching, vibrating and buzzing in legs.

I took mirapex 0.375 ER last night and it did NOTHING .

I never had trouble sleeping before and last night was awful. The buzzing and twitching wasn't relieved at all.

Can I have some advice on how long I should continue with the mirapex before giving it up and going back to the neurologist?

Sarah

71 Replies
oldestnewest
Lapsedrunner

As some of us have already said, the effect should be immediately positive, by all means try another but can’t see the point of much longer if no effect.

If it is neuropathy then gabapentin should help. You have more to discuss with your neurologist I guess.

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sarah19902

Thanks again lapsedrunner, I was just trying to find out if any one else had it not work immediately and how long to give it before I go back. I've been to three neurologists and they keep maybe saying RLS, definitely not neuropathy but I'm just getting lost. That's why I took the mirapex, so I have reason to go back and say no it doesnt work so maybe we need to start looking at something else.

I doubt they will be interested in doing it. As one of 100 percent certain RLS

I do appreciate your time;thanks again.

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Madlegs1

Mirapex should work immediately, and you're on a very high dose-- 0.25mg would be highest dose for rls.

If it was me, I would get off it immediately or you will have real problems later on. In my opinion.

You need to get some research on rls under your belt ,before going back to ignorant med professionals.

We continually come up against this problem.

Everyone needs to become their own expert in their health issues.

I cannot emphasise this enough.

Do Ibuprofen or paracetamol help with your condition?

Good luck.

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sarah19902
sarah19902
in reply to Madlegs1

I expressed to the doctor that I was very worried about how high the does was but he said it was nothing to worry about unless I develop some impluse control disorder.

I didn't want to take it. I sort of felt back into taking it by his strong opinion. He gave me that does as I have sensations in my legs 24/7 and he said I need something to mask those symptoms all day. I took the first pill about 12 hours ago and none of the symptoms have stopped

And then I decided it would be a good way to try it and say whether or not it works.

So Madlegs1, your experience too is that the drug has an instant effect (an hour or so after taking the medication?)? Do you also, in your experience, expect everyone with RLS to respond or could it be that I need to try another RLS drug?

I will not take another dose if that is the case, as it didn't help even the smallest amount. All it did was keep me awake.

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Madlegs1
Madlegs1
in reply to sarah19902

Manerva has said all that I would. Most people say the effect is immediate on reaching the right dose.

I started at 0.088 and went up one tablet after a week, which sorted my symptoms for about a year. Then I was lucky enough toget onto opiates, which I've been on for a while now.

Please read up on Peripheral neuropathy, for your self.

Cheers.

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sarah19902
sarah19902
in reply to Madlegs1

I mean I guess I'm already at the maximum dose recommended for RLS

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Madlegs1
Madlegs1
in reply to sarah19902

Yes, Sarah, definitely. If you are in USA, the dosages are slightly different. But the main point is that if the Mirapex is not working, then it isnt going to work, and neither will any of the other similar Parkinson type grugs. ( Dopamine agonists)

Pregabalin or Gabapentin are the next step, and may cover peripheral neuropathy as well. So may be worth asking to try them. But they take a few weeks to work, and can have side effects at higher doses..

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sarah19902
sarah19902
in reply to Madlegs1

Thanks Maglegs1, I'll go back to the neurologist and plead my case and if it doesn't work, then try to find another. It's exhausting the process.

Can I just stop taking the medication after two doses? Or should I too expect some weird side effects

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Madlegs1
Madlegs1
in reply to sarah19902

You will experience no side effects from stopping after just two doses.

It's late at night here in Ireland, so I'll say night night!

If you can get ' nightdancer ' to look into your interesting case, you might get more help.

All the best for now.

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Marvene1942

I was on mirapex for 4 to 5 years and believe me when it stops working you will go thru hell. I couldn't sleep, ate all night and put on about 50 pounds. I was miserable.

I went to a Dr. in Southern California and I am on a opiate. It stops the RSL. I am on a new one called Belbuca. It works well with me. Only thing it is so expensive. $400.00 a month. So now he is going to change to something else. I pray the new one works.

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Madlegs1

If you are in Southern CA, then it might be worth getting to see Dr Buchfuhrer.

rlshelp.org

He will most likely put you on methadone, which is a lot cheaper ( I think 😕)

Thanks for chipping in. Always good to get support.

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Marvene1942

He is my Doctor He is my Doctor isn’t he the greatest he put me on the expensive med nothing was working for me this med works great but can’t afford it and insurance won’t cover it until it becomes generic

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Madlegs1

Aren't I the genius altogether ,now?😎

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Zoreneedssleep

Marvene -- were you at the workshop last week? I'm looking for other folks who have RLS and live in Orange Co. I see Dr. B next month.

Will Dr. B find another less expensive drug for you?

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Manerva

Just to throw more weight behind what the others are saying.

If Mirapex didn't work immediately then it is unlikely that it will ever work.

It's not my place to judge, but I' m sorry to say that it doesn't sound as if your doctor is particularly knowledgeable about RLS or about the consequences of taking a Dopamine Agonist such as Pramipexole (Mirapex).

Assuming that the diagnosis is correct, then you are more likely to suffer augmentation as a result of taking Mirapex, Impulse Control Disorder occurs less frequently. A more responsible piece of information would be to warn you of augmentation as a potentially serious consequence of dopamine agonists.

You say your main symptoms are buzzing and twitching and these 24/7

The main symptom of RLS however, is an "urge to move".

Additionally, another diagnostic criteria of RLS is that symptoms occur mainly or more significantly in the evening.

As RLS is a "circadian" disorder, it varies over 24 hours. This doesn't sound like 24/7

Below is a link to the diagnostic criteria for the diagnosis of RLS. Note that your symptoms have to match ALL of the criteria.

irlssg.org/diagnostic-crite...

IF your symptoms do not match ALL the criteria, including the 5th, and Mirapex didn''t work, then it is unlikely that you have RLS at all and your doctor may have misdiagnosed it.

Your symptoms of "buzzing" and "twitching" sound more like a neuropathy rather than RLS. If the doctor who diagnosed you didn't do a neurological examination and blood tests for anaemia and diabetes, they haven't addressed the 5th criteria.

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sarah19902
sarah19902
in reply to Manerva

Thank you Manerva,

May I ask have you taken mirapex and experienced the instant effects?

I'm just worried that taking it once wasn't enough. It may be an irrational worry, which I've become prone too since all of this started :( :(

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Manerva
Manerva
in reply to sarah19902

Sarah, I was officially diagnosed with Idiopathic RLS in 2009, although I had suffered it mildly for a couple of decades before that

My main symptoms were

Irresistable urge to move accompanied by unpleasant sensations which I would have described as "crawling".

These occurred every evening and only in the evening and particularly when attempting to fall asleep, so much so that I couldn't get to sleep. Otherwise exactly as described in the criteria. Most nights I believe I managed to sleep about 2 - 3 hours. Some nights - none. This lasted some months I recall.

I was diagnosed by a neurologist after blood tests and the neurologist carried out a full neurological examination.

He prescribed Pramipexole.

The first night it took it, I took 0.125mg. I had no RLS symptoms at all that night, went to sleep and slept without any disturbance.

That's how effective Pramipexole is.

It is usually mmediately effective.

Pramipexole, however is not considered diagnostic.

HOWEVER, note that the form of Pramipexole you've been prescribed is "Extended Release" and in that case it may be that it takes longer to build up in the blood stream to a level that's effective. "Normal" Pramipexole achieves a maximum level in the blood within 2 - 3 hours.

I'm nopt sure what it is for Mirapex ER.

The diagnostic criteria remainTHE indicators of whether you have RLS or not.

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sarah19902
sarah19902
in reply to Manerva

Thank you so so much for the information. This period of time has been horrific for me. The drug has no effect the symptoms I am trying to treat. It has left me very tired as a result of not falling asleep.. I think it may have caused a bit of insomnia which I do not otherwise experience.

I did tell my doctor I do move my legs sometimes to try to get rid of the feelings of twitching and vibrating and that's why he diagnosed me with RLS.

I suspect other people with neuropathy too might move their legs to stop the discomfort but that might be a different 'urge' to move compared to RLS?

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Manerva
Manerva
in reply to sarah19902

The urge to move is not the same quality as moving to make yourself more comfortable or to relieve muscle tension or ease a pain.

Sometimes the urge to move in RLS is just that and is irresistable. If you don't move, it just builds up and builds up. It only occurs when you stay still and moving relieves it.

I also have neuropathy, and I experience it differently in that sometimes being in a specific position makes the pain worse, so I change position to relieve it. I wouldn't say this was an urge to move and I can resist it, it doesn't build up.

The other sensations I experience as a result of my neuorpathy don't urge me to move and movement makes no difference to them., i.e. buzzing, burning, pins and needles, shooting or stabbing pains and numbness.

It doesn't sound as if your doctor listened to you properly and/or doesn't appear to be aware of the diagnostic criteria.

If your symptoms clearly don't match the criteria then it may be worthwhile seeing your doctor again with a printout of the criteria.

There IS a possibility that the Mirapex ER may take some time for it to work for you, but most people who have taken Pramipexole remark on how immediate it is. The criteria are the key however.

If on reflection you think the symptoms you experience do match the RLS criteria and a diagnosis of RLS is confirmed after further medical examination and tests, then Mirapex is not, in some respects, the best first line drug treatment for RLS.

A Gabapentinoid has advantages over a dopamine agonist.

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sarah19902
sarah19902
in reply to Manerva

Thanks Manerva, I plan if the mirapex gives a response to go onto Lyrica.

However I'm not sure how much longer to give it. Is it safe to take for a few days and the suddenly stop?

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Manerva
Manerva
in reply to sarah19902

I wouldn't go onto Lyrica unless you can have your RLS diagnosis confirmed.

It may be worthwhile trying it for a few days.

I've never heard of anyone stopping Pramipexole after only a few days so I wouldn't like to say. I do know that the longer you take it, the harder it is to stop. If you do that and you're worried you could try taking a half dose for a few days before stopping it.

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sarah19902
sarah19902
in reply to Manerva

Sorry Manerva but would you expect pramipexole to work for everyone with RLS? He did say he expected it to work immediately.

My neurologist has said we are now to try roprionole? Sorry if I misspelt that?

He still is very certain it's RLS due to the uncomfortable feelings in my legs which can cause me to squirm about.

Do dopamine based drugs not work at all for some people with RLS?

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Manerva
Manerva
in reply to sarah19902

If you trust this neurologist then follow his advice.

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LotteM
LotteM
in reply to Manerva

Manerva and Sarah, I looked up the time for extended release pramipexole / Mirapexin to reach maximum value sin the blood. That is 6h, compared to 1-4h for 'normal' pramipexole.

Sarah, if you didn't get relief even after 6h after you took the pramipexole, it is unlikely it is RLS. I agree with Manerva on his points. Furthermore, I think one additional criterion used to be that symptoms were relieved by taking a -diagnostic- of a dopamine agonist. I don't know when they dropped that one. But it goes to show the importance of what you've done: taking the (rather high initial) dose of pramipexole without any effect on your symptoms.

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sarah19902
sarah19902
in reply to LotteM

Thankyou for taking the time to look that up. I appreciate it.

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LotteM
LotteM
in reply to sarah19902

You're welcome. The "pharmacological compass" (in Dutch, I live in NL) gives this information. I found out a while ago and now refer to it regularly.

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sarah19902
sarah19902
in reply to LotteM

LotteM did you ever take mirapex? Last night was awful, i couldn't sleep (which I normally can) and all the sensations in my legs remained. I was going to give it a week but after the advice here, I think that might be a pointless exercise

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LotteM
LotteM
in reply to sarah19902

No, I didn't. I was on another dopamine agonist, ropinirole (Requip) for about a year. Most of that time I already had augmentation. Initially led by info from this forum I quickly learned that it was better not to switch to another DA.

Have you tried codeine? Here in NL you need a prescription, but not in the UK. But if you don't have RLS after all, I have no experience-based advice for you. Only to once again get a neurologist's appointment. But, before that, try to load yourself with as much relevant knowledge. Manerva usually has good info and pointers.

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Elisse2

sarah, have you posted your symptoms in a forum for Neuropathy i bet there is such a forum for people who have it.

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sarah19902
sarah19902
in reply to Elisse2

I have, they seem to believe since I don't have any pain associated with it, that it's not neuropathy.

It's like I fit into nowhere haha :(

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Manerva
Manerva
in reply to sarah19902

There are different types and different stages of neuropathy. In its early stages, I experienced no "pain" with my neuropathy, The first signs were a feeling as if cold water was trickling down my leg or that there was a breeze blowing on them. I also noticed that the tops of my big toes and soles of my feet felt numb.

Another possibility, although you use the word "twitch" which is not the same as tremor, is that your symptom is tremors

Twitching is known as Fasciculations

Follow these links about twitches or fasciculations

healthline.com/health/muscl...

healthline.com/health/benig...

Follow this link to see if any of this, about tremors, sounds familiar.

healthline.com/health/tremor

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sarah19902
sarah19902
in reply to Manerva

Hey Manerva I definitely have both twitching and an internal tremor. Sometimes the tremor is so bad, I am surprised other people can't see/feel it

It also feels like huge strong beats down my legs.

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Elisse2
Elisse2
in reply to sarah19902

But you DONT have to urge to move your legs. so its not RLS.

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Elisse2

Oh ok. then its back to see your neuro, you need to say you dont have the urge to move its a urge you cant resist. that is the important part for being diagnosed as having RLS. which is different from just moving your legs to get relief from your symptoms. I really think you can rule out that you have RLS.

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sarah19902

Thanks everyone for the replies. It's been 18 hours since I took the 0.25mg er mirapex and the sensations are as strong and aggressive as ever! I would hope that if I did have RLS then the high strong dosage would at least provide me relief for the majority of the 24 hours.

The neurologist did, in his defense, say he would not be upping the dosage as augmentation will occur but if this doesn't even work than I dare say it can't be RLS... unless I am somehow now reacting to the very strong dose.

He also said, once augmentation occurs then he will just switch me to another dopamine drug but by the sounds of this website that is not something I want to go through, especially when it doesn't even help!

I will be trying to make another appointment but as we all know it takes months. I will also try to get a referral for a second neurologist.

I feel absolutely defeated and lost. There have been days where I thought it'd be easier just to end it all then continue down into this rabbit hole further. So those who have answered my question twice please understand that you have helped me hold on a big more.

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Zoreneedssleep

I am worried about your mental health too. Please tell the doctor how depressed you are. You need treatment for both RLS and mental health.

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Restless123

Don’t take it at all!!! It will make

RLS worse down the road.

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sarah19902

I don't plan to take it long term. I was using it as a way of working out if I did have RLS, have you taken it? Can you share your experience on how quickly it worked for you when you did take it?

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Restless123

I’ve had RLS most of my life. I’m 75 now. I first started with Requip 15 years ago. It was wonderful. First time I’d ever slept through the night. I was so so excited. As a couple years went my dosage had to increase. So my primary doc sent me to a sleep doc. He changed me from requip to Mirapex. I was on it for 10 years but not with total success. My dosage had to be increased to the max which made my RLS brutal. I had started augmenting so had to wean off of mirapex with gaberpinin and OxyContin..I had tried other combinations but to no avail. It was hideous. There would be nights I never slept or could stay still, even during the day. I was miserable. I’ve been off mirapex nearly 2 years and will not touch it again. Other meds don’t help either so I just bear with the restlessness and insomnia which comes and goes. I’m thankful that I’m much better now.

I can now go to a movie or concert without having to plan my escape and I can take a car trip without having to stop to stretch.

Now , back to your question, yes it worked immediately when I first took it. It was like a miracle but in time it turns your whole life into a hell.

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sarah19902

Thank you for the time you took to respond. It seems the general consensus is that it work from the first pill, a bunch of people have confirmed it acts like a miracle and takes away the RLS, but then a few years later it is torture.

It didn't take away my symptoms. I have tried two pills now. I won't be trying any more thanks to this forum. If I didn't have it I probably would have just kept taking it for months thinking it has to build up to work, when what I would have been doing is giving it a good chance to augment.

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Zoreneedssleep

You know, I'm glad to know that without any meds you are OK and can enjoy life. How does that happen with a lifetime of RLS? Good for you!

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Broadbandbill

Be very aware that Gabapentin is an evil drug. Mirapex helped me. Took a couple of days

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YodaDog

In what way is it evil?

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Manerva

Sorry to hear that you've apparently had some problems with Gabapentin.

I hope the Mirapex continues to work for you, but hopefully you're also aware of the long term risks.

Unfortunatly, as Sarah has written, Mirapex isn't working for her.

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Sara_2611

Hi

I've never used it before so I wouldnt know to be fair- Maybe give it a chance because you've only taken it once -medicines need time to work-its like antibiotics dont clear up chest infections immediately -you have to give them time

Perhaps try giving it a chance -a week or so something like that or maybe 2 weeks -& if after then there's no result then go back to your neurologist

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Elisse2
Elisse2
in reply to Sara_2611

Mirapex works straight away, and sarah has taken it over 24hrs so she should have seen a result especially on the dose she took. Mirapex doesnt need time to work.

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Sara_2611
Sara_2611
in reply to Elisse2

Hi Elisse2

Thanks .I've learnt something there so appreciate that

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Buddy2222

I started on a low dose of Miropex and it relieved it within four hours. I take it every evening with supper and by bedtime restless legs gone. It takes a few hours to work

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marsha2306

Please listen to all of us here. We’ve all been there. Yes, the dose is very, very high especially for a starter dose. Secondly, it doesn’t sound like it’s rls!

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Neverquitting

Sarah, I’m sorry you suffer. I know the hell of this disorder. I beg you to research the affects of Mirapex ( and all other dopamine agonists). If your dr is prescribing it he isn’t staying up on the horrific affects it has on RLS and you. I was on it for 9’years so I know what I’m talking about. Many are on this drug and once educated you will regret it. If you’re in the US, subscribe to RLS SUCKS on FB.

I rarely get on these sites and felt compelled when I saw the title of your post. I dont mean to scare you but at minimum your RLS will get worse on Mirapex and it is near impossible to get off the drug. Good luck and again I’m sorry you’re suffering. I didn’t sleep for 15 years and am so grateful be where I’m at now but it wasn’t easy. Karla ps i probably won’t see a reply because I try not to look at these sites. Email me if you wish. 🙏

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Manerva

I think it might not be a good idea to post your actual email address publically.. It's not good internet safety

Might be a good idea to delete it. If you want to contact someone privately, then I suggest you send them a private message.

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Broadbandbill

What do you take for rls please?

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Neverquitting

I’ve taken every drug under the sun. I had to reach the point where I knew none would fix it and no doctor would be there when they ruined my life. I had to get to the point where my system was clean ( 6months I think) to respond to other methods. I now live my life around caring for my nervous system; clean diet, mild exercise, chiropractic and therapy. I use CBD (I have the smoke is the only way it works for me), take magnesium, potassium and a prenatal ( not pregnant) all natural forms and use magnesium spray at night. At worse, I get up and stretch at night or change beds. I once was 30x severe, and had no REM for 15 years, I know sleep 6-9 hours and thank God every single day.

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Elisse2

Neverquitting we all think that sarah doesnt have RLS. so no worries of her staying on the Mirapex.

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sarah19902

Update, as I'm a scientist I repeated the dose of mirapex last night. It's 0.375mg ER, it's now 14hours after I took it and my legs have not been helped even slightly.

I can't say how it went during the night as I didn't have trouble sleeping. I know at some points my legs were still muscular twitching.

Thank you everyone for your advice but I think I will end this experiment here. The mirapex is not helping. I do not have an urge to move my legs but I do move my legs from the vibrations to get comfortable.

It does not get worse at night

You guys are worth your weight in gold.

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sarah19902

Unfortunately I that does mean back to the doctors, who are sick of me, wish I could take you all with me

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sarah19902

Oh and now, unfortunately the muscle cramping and spasming is probably twice as bad as normally experienced! I just read that mirapex can cause this as a side effect.

So, rather than helping correct my issue it is making it much worse :( God help me

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DicCarlson

For muscle cramps - and I get them a lot - try 1/4 tsp sea salt, 1/4 tsp cream of tartar mixed in juice and/or Endurolytes Extreme (from Hammer Nutrition) or similar electrolytes.

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ScribblerCLT

Hi: I've been on 0.125mg Mirapex for nearly a month and it helped instantly to calm my RLS, which set in soon after I was diagnosed with PD. In fact, it has calmed my daytime twitches and that unbearable under-the-skin crawling feeling most of the time, which is a relief. Hope you find the right combo!

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sarah19902

Hi Scribbler, thanks for your reply. The more the merrier. Do you mean it calmed your RLS instantly from the first dose?

I am thinking I have BFS which is confused with RLS as it shares many of the same uncomfortable feeling

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Zoreneedssleep

What is PD, Parkinsons? Please clarify.

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ScribblerCLT

Yes, Parkinson's Disease.

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ScribblerCLT

Yes, I settled to sleep instantly after the first dose. It's not like that every night, but I sure have many more nights being restful than I've had in about a year and half. I About a week ago, I suddenly noticed that my legs were bothering me less during the day as well; I'm wondering if that's the effect of them not moving all night, being more relaxed. And that's on the smallest available dosage of Mirapex. What is BFS?

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sarah19902

It's benign fasculations syndrome. I have thousands of little muscle twitches through my legs but occasionally in my torso which causes muscle clenching, pins and needles, vibrating... Hence the doctor diagnosing me with RLS.

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sarah19902

Mirapex did nothing to make these symptoms subside. Unfortunately there seems to be no cure or medication for BFSm I get these shivers that start in my buttocks and move down my leg which was also a key description that the neurologist used to diagnose me. I have no idea what the hell that is from. It wakes me up at night.

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ScribblerCLT

I have little twitches in my legs and occasionally my torso, but no butt shivers. Sorry to hear there's nothing to take for the BFS. Sleep deprivation has been the worst symptom for besides imbalance and leg weakeness, so the Mirapex is a relief.

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sarah19902

Did you find the mirapex too does nothing for all the tiny muscular twitches? Can you relate to the weird feeling that they give and how it could be confused with RLS?

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ScribblerCLT

I think so. It feels like this ripple that travels from one side to the other of my bottom torso, or a ripple that runs along the length of my thigh. I figured it was the internal tremors, another fairly uncommon PD symptom in those who don't have visible tremors. sometimes I feel like there are thousands of little ants crawling under the skin of my legs, and my legs will jerk or sometimes spasm for a few seconds, but when I'm at rest and I haven't exercised. It is completely random as far as I can tell. it is most unbearable when I can even keep my leg straight because I had to kick them or bend them to believe that pressure to move. The Mirapex has calmed a lot of that most but not all the time, though I don't think it's had any effect onf those ripples because they are fairly infrequent by comparison - maybe once or twice a week? I'm going to go to look into BFS, just to know.

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sarah19902

I have internal tremors. The mini twitches are constant for me, thousands a day.

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ScribblerCLT

My God that's awful; can you concentrate through that? My internal tremors aren't constant throughout the day, but a few minutes totally destroy me. Before the Mirapex, I just felt generally awful, like my legs were always uncomfortable and my stomach and torso were clenched; I only noticed it wasn't present about a week or two ago; wasn't expecting that. It almost seems like the Mirapex has had a more noticeable effect on me than the PD medication, though I'm sure my neurologist would disagree.

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sarah19902

I called my neurologist again and he passed on the message to the receptionist to go back to my GP.

I feel like giving up.

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