After suffering with this dreadful affliction for 40 years, I finally saw a neurologist last week. She is the first person to have ever taken me seriously in all these years. I have had blood taken for various tests. She really couldn't understand why it had never been done before. Anyway my biggest concern is this....she has increased my medication from 1 X 0.52mg of Pramipexole to 2 X 0.52mg a day. Although I have never experienced any side effects I am worried that this seems to be a high dose. What are your thoughts please?
Too much Pramipexole.: After suffering... - Restless Legs Syn...
Too much Pramipexole.
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Suebeloo
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That's a very high dose indeed. The neurologist considered to be the leading expert by most people here suggests you shouldn't take more than 0.26mg. Most people here, myself included, have run into serious augmentation issues with high dosages like yours.
I’m seeing my GP today and will mention your medication. I have suffered with RLS for 20 years and am lucky to get 2 hours sleep a night. Your experience finally gives me hope. Thank you!
I hope you get some satisfaction from your GP. I look forward to hearing how you go on. Good luck!
Hi, I saw my GP and Pramipexole 0.088mg (0.125mg) tablets were prescribed. The results were amazing!! I have only been on them for a week, but from the first night my RLS vanished completely! I can not thank you enough for this recommendation- it has changed my life! I am now spreading the word to everyone I know of who is suffering from this horrible condition.
That is really great news! Let's hope all continues to go well. So glad you have gained some relief.
You will want to get off prami as soon as possible. It is augmentation in a bottle. Keep on keepin' on.
Suebeloo, this is indeed a very high dose.
How were you advised to take it? What time of the day?
I was told to take the first at 9am and the second at 9pm.
I no longer take pramipexole, but when I did I took 0.125mg at 5 -6pm, and another 0.125mg two or three hours later. This got me through most nights until about 7am.
Unless you need to sleep in the afternoon, or have symptoms during the day, you do not need the morning dose.
From Tim to everyone on this blog. I am 73 tomorrow and I have had RLS for ten years. The best advice I can give to everyone is 1. See a neurologist and let them diagnose your illness and prescribe a solution and 2. Look into a CPAP machine to help you sleep through the night. i did both of those and it has help tremendously. I am currently augmenting this regime with some Hemp CBD oil.....in my case about 300 mg per day seems to work for me. I found a really cheap source at CBD Medix when I buy in large quantities. i started out with small doses and kept increasing until I noticed a difference in how I slept and felt and have leveled off at 300 mg....but I am 6ft3in tall and weigh 220. Everyone is different...good luck and keep trying for that full night's sleep.....talk to your neurologist.......and work with them!!!..tim
I hope this works out for you Suebeloo.
I remain confused about Pramipexole dosages. They are stated in two different numbers, which I don't understand. For example the tabs I take are identified as 0.18mg (0.25mg). Depending on what you read, either 2 or at the most 3 of those is the maximum, i.e. (bracketed numbers) 0.5 to 0.75. Doses above that are only used for Parkinson's disease.
When you write 0.52mg, which of the two numbers are you meaning? Even if you refer to the bracketed number 2 X 0.52 mg (is there a 2?), this seems to be above the maximum.
I have seen 3 neurologists in the UK, but have found them not particularly expert as regards RLS. The first started me on Pramipexole without any information. The second advised using Clonazepam when I couldn't sleep, but for a maximum of a month only. The third didn't add anything.
Lately my GP has prescribed Zopiclone for sleeping but only prescribed 10 tabs and told me to only take one occasionally. She suggested I see a neurologist privately, but I'm finding it difficult to find one at all, never mind one who has expertise with RLS.
The danger with high doses of Pramipexole is that you may experience augmentation. It then gets very complicated.
Members on here may recommend a reputable specialist in the USA to you, Dr Buckfuhrer. He can be contacted online even if you're in the UK. He gives options about various medication regimes depending on what you're experiencing at any time. Medications include Dopamine agonists, alpha ligands and opioids.
I currently take Pramipexole and Gabapentin. The latter is actually for nerve pain, but may be helping the RLS.
The thing about Pramipexole is that it is wonderful at first, but it becomes ineffective and/or may start making things worse.
If it's working for you at the moment, then you may want to do nothing. However, you are apparently on a higher dose than is recommended.
Sorry to say, sooner or later, this could cause problems.
Incidentally CPAP is excellent for dealing with sleep apnoea which causes sleep disturbances, I'd say it's unlikely to help with insomnia caused by RLS, unless you have sleep apnoea as well. To diagnose that you'd need to see a sleep specialist not a neurologist.
Sorry for being negative. With RLS I find you have to take it as it comes. Enjoy the times when it isn't too bad, change things around when it gets too bad and find ways other than medication to manage with it.
Suebeloo in reply to
Thank you so much for your detailed and informative reply. Looking at the tablet box, the front names the contents as Oprymea 0.52mg. Looking now at the side of the box it states "each prolonged release tablet contains 0.52mg Pramipexole (as 0.75mg Pramipexole dihydrochloride monohydrate)."
I am in the UK. Any help and information is very much appreciated and I thank you for your time.
Hi again Suebeloo. I'm not familiar with Oprymea, which is a brand name like Mirapex. Pramipexole is the approved or generic name for the active ingredient. If I'm right whereas the absolute Max recommended dose for RLS is 3 X 0.18mg (0.75mg), you're on twice that dose.
I checked, 3 X 0.18mg Oprymea (0.75mg) is 0.54mg not 0.52, that's what confused me.
I still don't get why there's 2 numbers!
in reply to
PS 1.5mg is the Max dose for Parkinson's disease.
cnagy44 in reply to
February 18, 2019 I was on 3 mg for over 15 years. I had augmentation after that. Now I am on 1 mg. I take Cataplex F. Seems to help.
Try alternative therapies - herbs, acupuncture, or even yoga therapy.
Again thank you for your reply. I really don't understand why the neurologist would double my dose when I was coping on 1 tablet per day. I am worried about the implications this could have on my health. I have read that it could create kidney and cardio problems. These are serious health risks.
in reply to Suebeloo
Hello there! I’m going to jump in here with my experience, if you don’t mind. I was prescribed Pramipexole in the States in 2011. I ended up on a 0.75mg dose (is that your dosage in the UK?). It worked wonders until augmentation set in 4 years later.
I agree that it is strange for your neurologist to double the dose if you were doing fine. I share your worries about health problems cropping up with all these medicines. The only thing I can say to that (and maybe give you something to think about) is that all medicines have their list of potential side effects. I think the core of the debate «I need this medicine» vs. «I’m scared of the risks» is quality of life. Are we willing to overlook these lists if it means getting our lives back? I hate being on medicine myself, but I am and need to be.
Suebeloo in reply to
I don't mind you jumping in at all and appreciate your input.
in reply to Suebeloo
I presumed that the neurologist doubled your dose because the lesser dose wan't working! Sorry. If the lesser dose was working, then it's a mystery why the neurologist doubled it.
Sails is right, it's quality of life that's important and part of that is balancing the benefits of medication against their consequences is part of the formula, By that formula, if 0.75 mg was working for you, doubling it only increases the risk of undesirable consequences, without additional benefit. Consequences includes augmentation, insomnia, hallucinations, and commonly, impulsive control disorder.
Apologies for appearing patronising, as regards doctors prescriptions in the UK, they should prescribe according to NICE guidelines (National Institute for health and Care Excellence). The NICE guidance on Pramipexole for RLS is maximum dose 0.54 mg (0.75mg).
cks.nice.org.uk/restless-le...
and
bnf.nice.org.uk/drug/pramip...
It's a bit of a minefield. Doctors should also only prescribe non over the counter (OTC) drugs according to the use they're licensed for in the UK. To do otherwise might put them at risk of legal action. I don't know, but it's possible that Pramipexole is simply not licensed for RLS at doses over 0.75 mg.
There's quite a lot of evidence apparently that Opioids are effective (with some people with severe RLS). As far as I know Targinact (Oxycodone and Naloxone) is the only opioid licensed for RLS in the UK, it's also covered by NICE guidance. Doctors are however reluctant to prescribe even this, never mind any other unlicensed opioid, (e.g. Tramadol, Methodone). This is because of the risks associated with them, (apart from addiction).
So, again, surprised that a UK neurologist should presctibe a dose suited for Parkinson's disease for someone diagnosed with RLS.
Cataplex F sounds interesting!
Not a high dose at all. I was up to 4 mg daily. I am now on 1 mg daily.
4 mg daily is way took high. Look at the leaflet which came with your medication box- it will show the maximum dose for RLS.
in reply to cnagy44
That's unusual compared to others on this site. What is it actually that you take, why was it increased to 4mg and reduced again? Don't you have any side effects?
I'm not challenging you, if it's OK for you then it's OK with you. I'd like to know because I've been advised to stop taking Pramipexole altogether.
cnagy44 in reply to
I voluntarily stopped the MP. However, I was up to 4 mg. I weaned down to 1 mg. I also take gabapentin.
You are right to listen to your intuition. The neurologist clearly is not an expert on RLS. My MS neurologist admitted to me that she doesn’t know enough about RLS to treat me or deal with the meds.
If you have only just doubled the dose- stop. Augmentation is a serious problem.
Read about Augmentation on the main rls uk site and the US RLS foundation site.
The iron test is a good thing so ask for a print out of the results. Your serum ferritin should be above 100 - the normal figure is anything above 15 but we need ours to be higher.
Are you on any other meds ? Some OTC meds can also make RLS worse like anti histamines and most anti depressants.
in reply to Joolsg
Hey Joolsg!
A gentle challenge for you:
How do you know that augmentation will happen to this person? I tend to agree that the dosage this poster is talking about is high, but why the sure-fire response that they should stop?🙂 I am not refering to just this thread.
Joolsg in reply to
A gentle challenge back- I haven't said to stop all the medication, just the double dose that the new doctor has prescribed. Sue says she does't have any side effects so why would a neurologist double the dose when the original dose is working???
If dopamine agonists are increased unnecessarily ( like here) then statistically, augmentation is likely.
I therefore think Sue should stop the double dose and stick with what she was on originally.
Joolsg in reply to
Also, with DAs, I don't always recommend stopping them on other threads unless there are clear signs of augmentation. I have even recommended reducing them slightly because occasionally, a paradoxical response can occur whereby RLS symptoms improve on a slightly lower dose.
So I don't always reply with a "sure fire" response to stop Dopamine Agonists especially when they are clearly working, as in Sue's case.
in reply to Joolsg
Maybe I should head up all my posts/replies with the word «rhetorical». 🤔Yes, I’ll do that. Thanks Joolsg!
Spot on--- if Pramipexol works- fine!
All we do on this site, is to warn people who tell us Prami is the answer to all our rls concerns, that it has an inevitable consequence, at some point in time, of augmentation.
It may be 10 weeks or 10 years, but it will come. There are strategies to help defer the dreaded augmentation.
It is our duty here to warn people of the dangers, as reported here countless times.
Cheers to you all.
Thank you all for your comments. I think that the best thing to do is to reduce to my previous dosage. I am going to make another appointment with the neurologist to discuss this and also the results of the blood tests when they come through. I really appreciate your help.
I think that's a sensible idea. Unfortunately, as Jools says, it doesn't sound as if your neurologist is particularly knowledgeable about RLS. It might be a good idea to go armed with some information.
Incidentally, I have to thank you for stimulate me to check some things up and as a consequence I've learned something new today. What I've learned, which shows what a sad sack I am, it's not illegal for someone to prescribe a drug and dose that's not licensed for RLS, as long as it's licensed for something. This is called "off-label" prescribing. However, I presume if they do and something goes wrong the prescriber is more likely to be open to charges of negligence.
Good luck
Suebeloo in reply to
That sounds very worrying.
in reply to Suebeloo
Don't be too worried, not being worried at all means you won't do anything, a little worried is good, it motivates you to do something, too much worry makes you incapable of doing anything.
I'm sure you'd notice if some of the less desirable effects of Pramipexole begin to happen, or your family might. If you know what to look for and you know that they are due to the Pramipexole. I doubt if you're in any immediate danger.
It helps to have a little healthy skepticism when being under a doctors care, rather than just a pasive receiver of prescriptions. This doesn't mean you should completely mistrust them. You do right to wonder why the neurologist doubled your dose when it seems it wasn't necessary. It might put your mind to rest if you could find out. Doctors are supposed to inform you about treatments, the reasons for them and the RISKS.
I, too, am a long-time sufferer of RLS. It IS very difficult to get doctors to take you seriously concerning this devil of a desease. I am 71, had it since I was 28 and my RLS is at its most frequent and worst. I believe that pramapexole is the generic for Meripex. I , too, took it for a long time. I was moved to two a day when needed. (Which was quite frequently.) I began to have upper respiratory problems. This was after years on Meripex’s successful treatment of my RLS. I saw a Pulmanologist . He diagnosed me as having Asthma at the age of 65!!!! I was in shock. It is a mild case. The doctor told me that Meripex was the cause of this late onset Asthma. No one ever told me there was a chance that this could happen. At the advice of a second neurologist, I now take Carbidopa-Levodopa 25-100 twice a day. Works for me now, but I understand it has its own evil side effects. I had to do something. Right now I just have to take my chances with this dopamine enhancer. I am sorry for the length of this post. Didn’t know what I could leave out. I hope it helps you or know what questions you might ask your doctor. Do some research. We have to be our own advocates. That’s what I have learned over my lifetime with several ailments. God help us with RLS.
PS. If anyone out there has some experience with Carbidopa-Levodopa (good or bad) I would appreciate your input. Thanks!
You're the second person recently to mention lung problems on dopamine agonists. There is a link with these drugs and fibrosis in internal organs and respiratory issues.
Levodopa is another dopamine agonist so will have the same side effects as mirapex so keep an eye on your asthma and look out for signs of augmentation.
in reply to Drury2
Carbidopa-levodopa is two drugs. Levodopa is a dopamine precursor and changes to actual dopamine in the brain. Combining this with Carbidopa means you get two drugs working in two different ways with different side effects. Together, they increase the effectiveness of the drug whilst reducing the side effects, because you get less of each.
Carbidopa works differently to Pramipexole. Pramipexole works by activating dopamine receptor sites in the brain cells, hence a true dopamine agonist, Carbidopa however works by preventing the breakdown of dopamine. Strictly speaking, Carbidopa is not a dopamine agonist.
Just to reassure you. There are different kinds of "asthma". The most commonly known is the allergic or auto-immune type commonly seen in children. There are others.
There are asthmas, not uncommon, that occur in later life and some of these are due to problems with the lungs themselves.
"Cardiac Asthma" is due to a failure of the left side of the heart to pump out enough blood from the lungs into the general circulatory system. The right side of the heart is potentially pumping more blood into the lungs than the left side is pumping out. This leads to inreased blood pressure in the lungs themselves. This can NOT be measured externally with a blood pressure machine, so your arterial blood pressure may be normal.
The increased pressure leads to leakage of fluid from the blood vessels in the lungs into the air passages, hence - asthma.
Pramipexole can cause heart failure and hence cardiac asthma.
Good news, this is reversible. It's probably not primary heart failure or the type of asthma you may be thinking of.
Furthermore, I have read a case study of a man who was on both Mirapex and Levodopa who showed signs of heart failure. The Mirapex was stopped but the levodopa wasn't. The heart failure resolved.
Joolsg in reply to
Thanks for clarifying the carbidopa-Levodopa matter Manerva. And for the very good research on the different side effects.Jools
I’ve been on Carbidopa/levodopa for 3 years now. I am weaning myself off because the side effects are wearing me down. I’ve tried 4-5 other meds too. I discovered CBD oil without THC and it calms my legs within a few minutes. Unfortunately, it is quite expensive for some. But I have no side effects from it.
Some years back I was on Pramipexole, should have been prescribed 0.18mg but was given 10x the dose. For some reason I was suspicious, checked and returned to GP who admitted the error.
Within a year you will suffer from augmentation. I am in that boat. My neurologist is going to prescribe a different med. I assume it will be gapenton escarbdril (sp). You may want to research the meds and provide you doctor with the info.
Unfortunately RLS is an affliction that requires YOU to do the research.
I’ve pretty much taken most of the meds here. Currently taking Carbidopa/levodopa but starting to wean myself off. The side effects are too much for me. I started taking CBD oil without the THC and it calms my legs within minutes. My RLS is quite severe and I used to rely on Vicodin too but the side effects from that affected my bowels. So, I’m wondering why aren’t more people talking out CBD?
Would you mind letting me know the brand you use of CBD? Thank you!
I have had RLS for years I have been on pramipexole 0.18 3 times a day I have been to see a neurologist very good but now I have been climbing the walls as I have augmentation don't no what to do due to see the neurologist again in August can't wait then I wish there was something for this 241241Henshaw take care
There is. To get off pramipexole once Augmentation has hit, you need strong painkillers like tramadol and/ or cannabis.
You can start reducing now - why prolong the agony until August when you see the neurologist?
Loads of us have gone through it.
Hi reading about you I have had RlS for years I was on a small dose of pramipexole I went to see the neurologist very good checked me all over then she put me on 0.18 mg 3 times a day on them for a while but now I am in augmentation very bad climbing the walls and walking around I am going to see the neurologist again if I can Take Care HENSHAW 241241
Hi there, I’m on here because my mum is on a low dose of pramipexole and I’m keen to try to slowly ween her off (as is she ). She is falling asleep all the time and it seems to make her ‘out of it’. I think it’s also causing her fecal incontinence.I think she’s on a low(ish) dose like .88 (need to check). She takes two pills and has tried to cut one down at a time but with awful side effects. Is it ok to physically cut these pills so you’re chopping of a bit more every few weeks? Sorry if I’m not supposed to post a question on this post...new to this forum! PS what is augmentation?
Yes you can chop/ cut the pills to slowly reduce the dose.
Augmentation is when RLS becomes more intense, starts earlier and moves to other body parts.
There is a pinned post ( top right of website).
The main page of the RLS UK site also has a video explaining what it is.
With every dose reduction, RLS becomes worse - you have to stick with it but your mum will probably need meds to help her through withdrawal. If she’s been on pramipexole for more than say 6 months it will be tough.
I used tramadol and cannabis to get through withdrawal. Others manage without but it is difficult.
Get full iron blood tests as raising serum ferritin helps withdrawal and RLS. The level should be above 100 ( for people without RLS anything above 15 is normal but not for us).
Thanks so much, much appreciated :-). I wondered about cutting the pills because a) they are tiny! wondering if you can get different sized ones? and b) it says on the instructions not to mess with them (I think because they are coated?). I get the impression that we're not going to get much help via the GP here!!
Hi
I think the dose your mum is taking is the smallest dose pill 0.088 and they don’t make smaller. I know they have warnings not to cut pills if they are extended release but I think most RLS doses are immediate relief.
The only way to take a smaller dose is to cut the pill.
I did it with my Ropinirole. I would break or cut the 0.5mg pill in half.
Thanks Joolsg - very helpful
As your mum reduces she will get terrible RLS but that is why withdrawal is very difficult. Go with her to see the GP and ask for help getting off mirapex. She will need a strong painkiller like tramadol or OxyContin or a drug like clonidine which helps withdrawal symptoms.
Let us know how it goes.
OK great. I'm wondering if we can even quarter the pills! But I know that whatever we do there will be a bad reaction - which is not great. She seems to have been made very frail by these drugs so asking her to put up with more is difficult. I will go to the GP with her I think as you suggest... Really appreciate your help with this 
PS how long do the bad side effects tend to last for?
I went through this in 2016 and the withdrawal lasted about 6 weeks. The 2 weeks after the last dose of Ropinirole ( same type of drug as Mirapex) were horrendous. No sleep for 10-14 days and constant RLS. If your mum is elderly and frail then I would recommend sitting down with the GP and seriously asking for your mum to be admitted to hospital. Withdrawal from these drugs is worse than withdrawal from heroin and crystal meth for the majority.
As GPs don’t even know what Augmentation is, they have NO IDEA how hellish withdrawal can be.
I suggest you ask your GP to read up on dopamine agonists, Augmentation and withdrawal and demand they put in place a safe withdrawal schedule with hospital supervision.
If your mum has not been on these drugs for more than 6 months, she may ( and I stress may) not experience a really bad withdrawal.
I asked my adult children to get illegal cannabis- it was the only thing that allowed me 1 hour’s sleep.
Feel free to ask me any questions- I’m happy to help as I know how horrible these drugs are and how helpless you and your mum must be feeling.
And you will need to discuss alternative meds for when off mirapex. Pregabalin or Gabapentin are now given instead of dopamine agonists but they can cause side effects like dizziness and loss of balance.
Your mum will also need iron blood tests and ask for the serum ferritin levels- they need to be above 100 for people with RLS.
Gosh it sounds so awful :-(. I don't think they should allow this to be prescribed to people, I really don't. I get it for Parkinsons - surely anything would be better than that...but RLS? I get it myself (not as bad as my mum did) but first thing I'm looking at is supplementing my diet with magnesium and other vits etc - but I know she just listens to whatever Doctor says! She's in her 70s - but it's like she's in her 90's...in my opinion because of this drug. Have you ever heard of anyone managing to do it super slowly and NOT having the awful withdrawal (or at least having it minimally?)? Originally I thought about crushing it and using super sensitive micro-gram type scales to measure the reduced amount. But no idea if you can crush them - certainly, that's the kind of thing they say no to on the packet! Once again, I really do appreciate you taking the time to write to me about this :-). Hope I'm not hijacking someone's post!
I’ve only heard of one or two who didn’t suffer horrible withdrawal and they were on very low doses and hadn’t been on it for more than 6 months.
I agree with you but sadly RLS is not taught at medical school so doctors have no idea how serious it can be and they are totally unaware of how dreadful Augmentation and withdrawal can be.
You can crush the pills and dilute them and do micro dosing. I know InvoluntaryDancer does that. The slower you can reduce, the gentler it should be in theory.
You can always make an individual post at any time and you will get lots of responses and offers of help.
OK that's all really interesting. I know that I'm going to do a lot of research before suggesting she does anything. Much appreciated and you'll probably see me pop up with various questions
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