Has anyone heard of this? I had a telephone consultation with my Neurologist who prescribed it, because I am not happy with the Gabapentin I am taking. Combined use of 2x600 mg of Gabapentin, 2 co-dydramol and 0.5 mg of Clonazipam each night is still giving me insomnia and restless legs. I was so proud of myself coming off the Dopamine Agonists for 14 years and now he wants me to get back on.
Now I have just read somewhere which says it is for Parkinson's and not for RLS.
I can only say that I have read a study which was looking at the extended release pramipexole for RLS. I have also come across other members of this forum who have taken it.
So yes, it can be used for RLS. I imagine, as for the immediate release version, the dose for RLD is lower than the dose for Parkinsons.
The study I read suggested that the extended release version is less likely to cause augmentation. In fact, it was looking to see if it actually treated augmentation.
Obviously if you do decide to take it, keep to the lowest dose possible.
Another option is to ask for a more potent opiate. Codeine isn't ideal for RLS. I'm guessing that that request might be refused.
Also, if the gabapentin simply wasn't working, but no undue side effects, you could ask to try pregabalin, it's more potent than gabapentin.
I forgot to mention that my eyesight has deteriorated since using Gabapentin and that probably would be the same with Pregabalin. I am hugely relieved to hear from you that Prolonged Release Mirapexin is used by some people for RLS. I am sure he is putting me on a really low dose.
As ever, thank you so much for your help.
Eyesight problems can occur with either gabapentin or pregabalin I hear. So yes, wise to avoid both.
Hi Manerva I was interested in what you said about deterioration of eye sight I have been struggling with my eye sight I only renewed my glasses few months ago but I am having problems seeing small or light writing especially crossword clues. I wear varifocales. I also have dry eyes and small cataracts. Any advice would be welcome. I take the smallest dose of pramipexole and 600 mgs of gabapenton 3 × daily.
When you have your eyes tested they ask you if you're on any medication. They ask you because some medications can affect your eyesight.
So you tell them, and they completely ignore it!
Gabapentin can make your vison blurred and can cause double vision.
My eye test results didn't change much for 12 years then after starting on gabapentin I had 2 tests within 3 months and it changed, I'd say signficantly.
On the second test I told them about the double vision, (also a sign of brain trauma), but they ignored this.
When I asked why it had changed so much they said it hadn't changed that much, - really. They prescribed me some new varifocals, I'd say very different to my previous prescription.
I took them back after a few weeks. They said there was a technical poroblem with the frames and the lens size and shape, so I changed frames and had new lenses. They said give these some time to see if you get used to them.
I could read brilliantly, I could see the hairs on a fly's legs an inch away! (slight exaggeration, but you get the point), but anything more than a couple of meters away was just a blur.
I took them back. I asked again why the prescription had changed in 3 months. This time, they said there was sometimes a slight variation between different testers, a matter of "interpretation" Pardon?
They did another test. The results changed again, near enough back to how they had been. So again, new lenses.
I still get blurry vison, but now realise it's mainly in the morning before the previous night's gabapentin has worn off.
Next time I have them tested, I'll go as late in the day as possible and I'll take them the information about gabapentin blurred vision and diplopia (doiuble vision).
You are taking 3 times more gabapentin than me, I only take it at night. Typically 3 times a day is for nerve pain or seizures, not RLS.
Gabapentin can also cause swelling of the retina or retinopathy, which should be picked uo if you have a retinal sacn when you have an eye test.
I belive the burred vision, diplopia an retinal oedema are reversible.
However, retinopathy, I believe is more serious.
Here's a link to a study on extended release pramipexole and augmentation
Hi I was on the prolonged release pramipexole for over 18 months and at first it worked like a dream then augmentation set in and my neurologist kept increasing the dosage until I was on the maximum allowed and augmentation set in again and it was hell coming off it so I thought I would just warn you of the dangers it may work differently for you but just be aware
I've been on this for nearly one year and it has stopped my rls almost completely. I take them exactly 12 hours apart. I've found that I can't drink alcohol at all as symptoms return, albeit slightly. I also have Gabapentin.
If you came off dopamine agonists because of Augmentation then I would not consider pramipexole (Mirapex) as you will augment again very quickly.
Hi Jools, I'd normally agree with you, but in this case gabapentin didn't work for Felicity so based on the study below, I thought the extended release pramipexole might be an option.
sciencedirect.com/science/a...
The study is interesting but was written in 2013. Many experts have moved away from ALL DAs since that date as the increasing incidence of augmentation becomes apparent.
I personally would never touch another DA again as I know I would never, ever get through a second withdrawal alive. I think you are one of the lucky few who did not suffer an horrendous withdrawal so I can understand why you might consider a long lasting DA.
Perhaps opioids would be a better, safer option in this case, given that alpha2delta ligands seem to have caused eyesight issues.
Hi Jools,
How's your regime working these days?
It’s acceptable Heather- I have no RLS in the day and get it on average 5/6 nights a week. I can usually get back to sleep within half an hour by doing pilates leg strength exercises.
As Dr Buchfuhrer says, if we can get 85-90% coverage , that’s a good result.
How about you?
Agree, I wouldn't touch another DA either. Luckily gabapentin only gives me minor eyesight problems.
Agree, an opiate might be safer, but not so easy to get.
Hi both - what type of drug is Gabapentin? I've heard it mentioned here a lot, and presume it's not a DA?
It's not a DA, correct. It's from a class of drugs known as alpha 2 delta ligands. It was originally used for seizures and also for neuropathic pain. It can be effective for RLS. It works differently.
The advantage of gabapentin over DAs is that it doesn't cause augmentation.
THanks for explaining Manerva!
Try asking for lyrica 'pregablin !
Hi. I’ve been using this for a long time. I too have been on Gabapentin (off now) for different reason.
I take 1 x 0.35mg and 2 x 0.088mg at 6pm. Then around 3/4 am I’ll take 1 x 0.088 if I feel the muscles starting to twitch.
But I switch from Mirapexin to the generic Pramipexole. Usually around 6/8 months. As I find if I only use the same one all the time it stops working. So switching works for me.
Hope this is of use.
The dose you quote doesn't sound like the extended release version of pramipexole, it sounds like the immediate release version. In addition the daily dose you're suggesting is way too high, with a higher risk of augmentation.
It also seems you take the first dose too early. It's better to take it 2 hours before bedtime. If you take it too early then it wears off too soon, hence you have to take a second dose at 3-4 am.
If you take it at 6pm because your symptoms are starting early in the evening, then you may already be starting with augmentation. Symptoms starting earlier is an indicator of augmentation.
What’s augmentation ?
Augmentation is one of the consequences of taking a dopaminergic agent for Parkinson's disease or RLS.
The majority of people who take a dopamine agonist (DA) for RLS, that is either pramipexole, ropinirole or rotigotine suffer from augmentation after a few years and in some cases, only a few months.
Quite often it happens after the dose of the DA is increased because it is no longer working as well.
With augmentation, instead of the DA relieving the symptoms, it makes them worse.
The signs of augmentation are -
- symptoms get more intense
- symptoms spread from just the legs to other parts of the body, e.g. arms, shoulders or abdomen
- symptoms start to occur earlier in the day
- symptoms start quicker i.e. it takes less time for them to start after staying still.
The factors affecting augmentation are -
- which of the 3 DAs you take, pramipexole has the greatest risk
- the longer you take the DA, the greater the risk
- the higher the dose you take, the greater the risk.
Immediate release pramipexole tablets come in strengths of 0.088mg, 0.18mg and 0.35mg
The "official" maximum recommended dose for RLS in the UK would be 1 X 0.35 and 1 X 0.18, (2 X 0.088) What you're taking is in excess of this.
However, more recent recommendations advise a much lesser dose as a maximum because of the risk of augmentation.
The latest recommendations advise that DAs are NOT used as a first line medication at all for RLS because of augmentation.
I'm sorry to inform you that if you're not already suffering augmentation, then it is probably inevitable that you will do in the future.
Doctors who prescribe a DA for RLS, at least in the UK, are supposed to warn you of the risks of these drugs, including augmentation.
Once augmentation has occurred, the best way of treating it is to reduce and possibly stop taking the DA altogether. This is very difficult to do, because the drugs create a high dependency and withdrawal effects can occur within a few hours.
Gosh this is very detailed in language I don’t really understand! I’m going to print off tomorrow and read it carefully with google next to me! Thank you for this amazing effort. I’ll digest and get back to you.
Sorry about the language.
If it helps, dopamine is a neurotransmitter, that is, a substance that helps one nerve cell pass a message on to another nerve cell. The "sending" cell releases the dopamine into a small gap between the cells. The "receiving" cell picks up the dopamine at specific places called "receptors". This then triggers the second cell.
In RLS, there is a problem with dopamine receptors not working well enough.
Any substance which affects this system is called "dopaminergic".
Some substances enable receptors to work better, in which case they're called "agonists". Substances which help dopamine receptors are hence "dopamine agonists".
Since they help dopamine receptors work better, they can relieve RLS symptoms.
," Augmentation" in RLS has a special meaning, Basically it means a worsening of the symptoms.
That might make it clearer, I hope.
This is a link to an article on augmentation.
Just a minute. Hold the horse. Gabepintin in 600,mg is for restless leg syndrome. It has the prefix Horizon. The vendor makes it specifically this way. Now I take Neurotin prefix and the Gasbipintin is in a capsule 300mg. This is made that way specifically for healing the nerves AND antiseizure. A 3rd type is for shingles(herpes zoster.) Does your doctor know the difference? Now if you take the mirapexin, it is also called Ropinrole. start at .5mg. It is also in the family for Parkinsons and works well for me. Some meds work well together. Your strong 600mg gabipintine should not be used with the Ropinrole. Listen to me. I know. I jerk any time I get drowsy (after a meal) and at night. Take one of ropinrole .5mg at 1 hr before lunch. Take another one of .5 ropinrole before dinner. Before going to bed( 1 hr) take two of .5 mg ropinrole and two of Neurotin gabipintine 0f 300mg capsules. I call this THE GOOD LEG MONLUX PROTOCOL. My movement Neurologist has approved. My jerks are not in my head. They are lightening bolt myoclonic innervated jerks.. I have researched this for a year. DO NOT increase any of the protocol or you will get abatment and get worse. For pain, I use tramadol 50 mg one in am and one in the aftert noon. DO NOT increase to stronger hydrocordon or stronger ones or you will become a HOP HEAD. Once your body gets use to this routine, you will get ALMOST 100% relief. The exception is about 5:00 AM some mornings. Swallow your pride. If soft ankle taps start, get up and semi-wake up by walking for a while and going to the bath room. Then, go back to bed. Once awake, you can start the day with one tramadole 50mg and start my protocol at 1 hr before lunch with 1 ropinrole.5mg. "You will never get rid of this. Face it." This will brighten your life but DO NOT INCREASE ANY OF THE DOSES. I am a 90 year old male retired physical Therapist and have had PHYSICAL myoclonic jerks for 3 years. The Academy of Sleep Disorders is light years behind and still says this is in our head.Only. One day time study by Italians as been done, Their conclusion was you think about moving before noon and periodic leg movements start after noon. Listen everyone, it is a matter of somulence or nodding off with your legs elevated in a recliner, most of the time.
Hi Bill, just to point out some inaccuracies in what you say.
Neurontin is a brand name for gabapentin. In the UK we get generic gabapentin, not Neurontin. The generic gabapentin is produced in 100mg and 300mg capsules. I know this because I have them.
Horizant is a brand name for gabapentin enacarbil. Yes, it is different and it's not available in the UK. As far as I know only the US.
Since we can't get gabapentin enacarbil (Horizant) for RLS in the UK we are prescribed gabapentin (Neurontin).
Gabapentin is licensed for seizures, neuropathy and MS. It is prescribed off label for RLS, shingles and migraines.
Since Felicity21 has said gabapentin has caused eye problems, none of these is advisable. Nor is pregabalin (Lyrica).
Mirapexin is a brand name for the generic pramipexole. It's also known as Mirapex or sifrol.
Ropinirole is a different dopamine agonist, commonly branded as Requip.
Mirapexin then is NOT ropinirole.
Important because you appear to be taking 2 mg of ropinirole a day, which may be OK for ropinirole, but it would be a HUGE dose of pramipexole!
I also never suggest that anyone take amy dopamine agonist several times a day. If this is because symptoms are occurring during the day, it may be because the dopamine agonist is causing augmentation.
Taking more means making the augmentation worse.
Finally, myoclonus is not RLS.
Apologies for writing this, but I wouldn't want others to get confused.
I am not certain, but isnt ext. release mirapexin dosage higher than what is now recommended for RLS, even the lowest dose. ?
The minimum dose of pramipexole ER is apparently 0.26mg (salt)
Assuming the max dose recommended for the immediate release version is 0.25mg (salt) then yes it is slightly higher.
However, it's released over 24 hours, not over 3 hours (or so), so the level in the blood stream doesn't get as high.
Nonetheless, as Jools points out, the study I cited is dated so even the ER version is no longer recommended.
However, I felt sorry for this member who is between a rock and a hard place, gabapentin is causing vision problems, pregabalin would too and an opiate potent enough might not be easily obtained. I thought the prami ER more acceptable than nothing.
Hello again. Apologies, I'm being reminded by other members that it is not a good idea to take any dopamine agonist, especially having taken one before and suffered augmentation. The risk of augmentation is too high, even with the ER version.
I did say that pregabalin may affect your vision the same way gabapentin did.
However, what exactly is your vision issue?
Blurred vision and double vision can occur with gabapentin/pregabalin.
My vision didn't change for years, then, apparently, after starting on gabapentin, it changed suddenly in 3 months, then again in another 3 months. I had to take the new spectacles back twice!
I now realise that my vision is a bit blurred in the morning and gets better as the day progresses. If I have my eyes tested at different times of the day, they give different results.
For me, being a bit blurry in the morning is far better than sleepless nights.
If this is the case, then it might be worth you trying pregabalin.
If your vision problem is more serious then pregabalin isn't an option.
As Jools points out an opiate might be a safer option, the difficulty is getting a prescription. Co-dydramol simply isn't potent enough.
Hi there Minerva, my optician was sufficiently worried about a large myopic shift in my contact lens prescription since last year of R -1.00 and L -1.25. With me it is not just blurryness in the morning. The effect was sufficient for me to have stronger lenses. If I try my old glasses in the evening I notice they are not good enough. I am 70 and I thought shortsightedness in old age would himprove. In the meantime a blood test has ruled out type 2 diabetes. So the more likely cause is the Gabapentin.
People on this forum have now pointed out the risk of experiencing augmentation again when going back to a DA, so I am aware of this. However, I am going to follow my Neurologist's recommendation of trying what he calls Prolonged Release (PR) Mirapexin. Will let you know how I get on. But a huge thank you to everyone who replied.
OK good luck with the Mirapexin.
I'm definitely one of the lucky ones. I've been on Sifrol, (Australia's version of Mirapex), for 12 years now. No RLS and thank god no augmentation yet. I will be saying goodbye when that arrives.
I wonder if that’s avail in UK then. I’ve really got Periodic Leg Movement. I’ve had it for 48 years! It was an Australian lady at a trade fair who told me about mirapexin about 16/17 years ago! I do need to take it at 6pm as leg, alternately,! Tend to start badly at around 8. I get it during the day at times but try just to put up with it.
Pregablin I won’t touch as it is horrible for putting on weight which I can’t afford to.
I was using tramadol for pain relief for 3 years. Hellish to come off, I am avoiding all opiates. I’m trying CBD now in a massage oil and drops for pain. Hopefully it may help PLM too.
Pramipexole is the generic or approved name for the dopamine agonist.
Since various pharmaceutical manufacturers make it, it has various brand names.
This includes Mirapex or Mirapexin and Sifrol.
In the UK NHS doctors are not allowed to prescribe a medicine by its brand name (i.e. Mirapex, Mirapexin, Sifrol etc) only by its generic name.
The only difference between all the different "brands" apart from the price, is that they may have different "excipients" in them. These are the non-active ingredients of the tablets. The main one is usually lactose.
Othewise, whatever the brand name, or no brand name, they're all still just pramipexole.
You can ask a pharamcy to give a particular brand of pramipexole, but in that case you would have to pay the full cost.
It's possible you may be able to obtain Sifrol online. You would have to pay the full cost.
Why bother, pramipexole is still only pramipexole, whatever brand name it has?
It will still cause augmentation. By the sound of it, you are already suffering this.
Gabapentin dose.
Pramipexole (Mirapex) Extended release 
Weening off Pramipexole to start Gabapentin
Anyone have face vibrations on lyrica
