Coming off pramipexole: I would stick... - Restless Legs Syn...

Restless Legs Syndrome
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Coming off pramipexole

J296
J296

I would stick at it but it is difficult. I was on pramipexole for 9 years. Initially it worked well. But I had to keep increasing the dosage from 0.088mg at the start to 0.7mg for the last 3 years. Like you I was suffering from augmentation and it became clear that pramipexole was making my condition worse. My sleep was down to 4/5 hours a night.

Coming off pramipexole was very difficult and I had a number of sleepless nights. Since then I've tried rotigotine patches and gabapentin without much success. I'm now on 300mg of pregabalin.

Although I'm not cured, my RLS is much less pronounced during the day and evenings. I am also getting more sleep - 6/7 hours. But nightimes are still a challenge often waking with RLS symptoms in my legs and sometimes arms. When this happens cocodamol or a soak in a bath with Epsom salts can provide relief.

Hope this helps.

51 Replies
oldestnewest

Hi therr, thanks for sharing this.

It seems you have posted this message in response to some other members post. I can only guess at who that is.

It's just a tip but if you wish to reply to someone's post the best way of doing that is to click on where it days "Reply to - - " the member's username, in their post.

If you do that, the person you're replying to will be sent an email notification that you've replied to them. Then they can read your reply.

Since you've started your own "new" post, the person you want to respond to will not know you've replied.

If they are in the habit of reading new posts, which not all members are, then like me they will guess you've replied to somebody, but they might not realise it's them.

As regarfs yoir own experience. I ' m sorry to hear your problems with pramipexole. I also was taking 0.75mg and suffering augmentation. Luckily I wax informed that weaning off pramipexole meeds to be done slowly, the slower the better. I did it over 10 months and was fortunate enough to have no great difficulty.

I wouldn't ever take any dopamine agonist again whether that be pramipexole, ropinirole or rotigotine. Once you've augmented on one of these, the chances are you'll quickly augment on another.

I'm sorry that the gabapentin didn't work for you. The pregabalin seems to be working to some extent.

If side effects are tolerable you could try increading the dose. The other thing, which you might already know is WHEN you take the pregabalin. If you're able to get to sleep, but wake up early, with symptoms then it's possible.you're taking it too early.

If the pregabalin is really not satisfactory, then as you've found, an.opiate can help. Co codamol does have some opiate in it, i.e. codeine, but even if it's prescription strength, not a lot. If it's over the counter even less.

There are more appropriate opiates for RLS, but you may have to see a specialist to get a prescription.

In the meantime, I hope you are also aware of the role of iron in RLS and the non-pharmacological therapies beside magnesium.

J296
J296
in reply to Manerva

Thanks Manerva that's really helpful. And yes I was replying to someone else's post but pressed the wrong button!

J296
J296
in reply to Manerva

Hello again Manerva,

Yes I was aware of the role of iron in RLS and take ferrous sulphate as a supplement to pregabalin.

Do you have any more information about appropriate opiates for RLS and other

non-pharmacological therapies beside magnesium? I could then discuss options with my GP and consultant.

Thanks again

Joolsg
Joolsg
in reply to J296

Have a look at the post I made recently about the study on Opioids by Dr John Winkleman. It lists all the opioids that participants are taking.

Joolsg

J296
J296
in reply to Joolsg

Thanks Joolsg. Very helpful.

Will look at your previous post

Manerva
Manerva
in reply to J296

There are various sources of information about the non-pharmacolgical remedies for RLS which includes this forum!

A brief summary -

Underlying conditions

If necessary, if you have any symptoms of any other condition it's worth having them investigated since there are various which can lead to RLS or worsen it. These include thyroid dysfunction, kidney dysfunction, diabetes and neuropathy. If your doctor suspects any of these then some blood tests could be considered.

Various supplements

As well as iron, some people find magnesium helpful. There are magnesium tablets, skin oils or some people find bathing in Epsom salts helpful.

Vitamin B12 and vitamin D supplements can be helpful if you have a deficiency in these. You can take these supplements in recommended doses harmlessly. However, they may have no effect if you don't have any deficiency. A blood test for both might be helpful.

Celery juice, apparently can help. It contains a strong anti-oxidant and has neuro-protective properties. You can get tablets s ono need for a juicer and tons of celery!

Diet

Some people find that diet plays a large part in their RLS. Such diets include,

a diet recommended for people with Irritable Bowel Syndrome , if you have IBS.

a low carbohydrate diet

a low oxalate diet

lactose free diet, if you're lactose intolerant.

gluten free diet, if you're gluten intolerant.

avoiding certain food additives.

Avoiding aggravating factors

There are various things which can either cause or make RLS worse

SSRI and tricyclic antidperessants.

Proton pump imhibitor and H2 inhibitor antacids

Some anti-nausea medicines e.g. metoclopramide, domperidone,

Sedating antihistamines.

Beta blockers

Some medicines for High blood pressure e.g. calcium channel blockers.

Alcohol

Refined sugar.

"Devices"

Various devices have been claimed to relieve RLS symptoms

Compression stockings - if RLS is due to venous insufficiency

Vibratory devices

Weighted blankets

Non-regulated or "natural medicines"

These include cannabis and Kratom, a tree bark extract with opiate like properties.

Unfortunately, pharamaceutical companies on ther whole have taken little interest in most of these, so there is no compelling evidence that most of them work.

It then becomes a matter of personal trial and error to see if any work for you personally.

Myths

Some people suggest other things that they might claim work for RLS, but they're largely discredited, i.e. they do NOT work.

A bar of soap in the bed

Tonic water

Any herbal remedy that's claimed to work for pain or help sleep, but even if they do this may have no effect on RLS symptoms.

-

The main opiates that seem to be popular for RLS include

Tramadol, but the short acting version of this can cause "rebound" i.e. when it wears off, RLS gets' worse.

Oxycodone, which is licensed for RLS in the UK

Low dose methadone

More recently, buprenorphine.

Also see Jools reply.

I hope this helps

J296
J296
in reply to Manerva

Thanks Manerva. That's very helpful

Hey

I take pramipexole for the past 3 years as I’ve got lymphedema in both of my legs. I started with just taking one tablet a night and it helped for a while and then I had to up it to 2 a night a my legs were getting very restless at night time but now I’ve had to up it to 3 a night now as if I don’t I don’t get any sleep and I’m restless through the day. I also get it in my hands as well.

Claire, it seems you might be augmenting. You exhibit all the signs!

Might be useful to research the condition before it gets too bad.

0.25mg of prami is deemed max dose for rls.

Good luck.

Hidden
Hidden
in reply to Madlegs1

You're quite right. 750mcg (•75mg) is the maximum dose of pramipexole for RLS.

Madlegs1
Madlegs1
in reply to Hidden

My reading is 0.25. Not 0.75.

Maybe we are referring to different forms of measurement?

Hidden
Hidden
in reply to Madlegs1

Yes we are. You're talking about mg. - I'm saying mcg. 750mcg = •75mg.

Madlegs1
Madlegs1
in reply to Hidden

0.25

Zero point TWO five. 🧐

Hidden
Hidden
in reply to Madlegs1

Yes, and take I take 3 of them. That is 3/4 of a mg, or 750mcg.

Madlegs1
Madlegs1
in reply to Hidden

This is ridiculous.

The only reason I'm continuing with this conversation, is to clarify to other readers, that the maximum recommended dose for Pramipexol is 0.25 mg.

Unless someone corrects me with scientific back up.

I'm done.

Cheers.

Hidden
Hidden
in reply to Madlegs1

Hey Madlegs1 - I'm honestly not looking for an argument. I am neither a doctor or a scientist. Pramipexole is a prescription only drug. Surely the person who writes the prescription decides on the dose? In my case, it is 3 ×0.25 tablets.

Joolsg
Joolsg
in reply to Hidden

neurologylive.com/clinical-...

You may find this helpful. After 10 years, around 80% of patients on DAs will experience augmentation. You’re doing well so far but let’s hope you’re in the lucky percentage that escapes augmentation. The article also explains that most problems are caused by neurologists prescribing too high a dose.

Most long term posters on this site have suffered negligence by both GPs and neurologists and we therefore know that the prescribers are not always right.

Most RLS experts are quite clear- DAs are no longer first choice treatment for RLS because of the high risk of Augmentation.

It’s great that it’s still working for you after 5 years. Ropinirole worked for me for 10 years.

The odds are against you though.

That’s why long term members on this site are speaking out about high doses of DAs.

Hidden
Hidden
in reply to Joolsg

Thanks for that Jools. I do appreciate you taking the time to reply. I read the article by Dr Buchfuhrer and it's very interesting. However, I would prefer to listen to the doctor that I've known for years - and whom I trust - than someone online and from another country. I'm glad that his methods are working for you. Hilary.

Joolsg
Joolsg
in reply to Hidden

Good luck Hilary. I really hope you get years more on your high dose of pramipexole and never experience augmentation.

Joolsg
Joolsg
in reply to Hidden

Hi Hilary

I suggest you follow the recent post by Simo90 on pramipexole. You’ll see why we don’t have much faith in doctors or neurologists in the UK. Hopefully you’ll then understand the strong feelings overprescribing of pramipexole causes here.

Take care

Jools

Kaarina
KaarinaAdministrator
in reply to Joolsg

I believe Hilary left the forum yesterday as her username is now "Hidden".

Joolsg
Joolsg
in reply to Kaarina

Thanks Kaarina.

Manerva
Manerva
in reply to Madlegs1

You are correct and I'm done too.

Hidden
Hidden
in reply to ClaireG0208

Hi Claire, like you I've been on pramipexole (sifrol) for nearly 5 years. Many people on this site don't agree with that because of Augmentation. However, it does work for me and so far, no Augmentation. Personally, I wouldn't write it off completely. I do hope that your RLS improves. Good Luck.

Manerva
Manerva
in reply to Hidden

I appreciate that you write about your experience presumably with the intention of helping people.

It's also great for you that you have been taking Sifrol for so long without suffering augmentation.

However, I'd ask you to consider that since you haven't yet suffered augmentation then you have no insight into this condition. Hence I can imagine that you do not understand how serious it can be , causing suffering and affecting other aspects of peoples' lives and health.

Since augmentation is caused by dopamine agonists such as pramipexole then in my mind, writing "I wouldnt write it off completely" is analgous to encouraging someone to continue taking something poisonous that's making them ill.

Its a shame that you don't appear to accept responsibility for making such ill considered remarks, because they are, in the least, not helping and are potentially harmful.

Hidden
Hidden
in reply to Manerva

I have as much right to express my experiences Manerva as you have. Pramipexole is working for me. Everyone doesn't get Augmentation. BTW - I assume that you're qualified to give all this advice.

Hidden
Hidden
in reply to Hidden

You sure do!!!!! No one is right and no one is wrong. Everyone is equal and everyone who has RLS has an equal opportunity to share their experience.

Despite having suffered horrible augmentation from Pramipexole, I am open-minded enough to know that not everyone will experience it. Just like everyone has their own journey with cancer for example, everyone has their own experience with RLS. I could say a lot more, but I won't since I already feel bad for continuing a tangent post to what the original poster wrote.

You are writing about your experience; don't ever allow others to put you down because of it. You're an awesome person!!!!🙂 I wish I would've gotten the same encouragement instead of what I went through with this group awhile back, but I didn't. A shame I know, but I can give it to you!

I won't comment anymore to this tangent.

Hidden
Hidden
in reply to Hidden

Thankyou for that. I feel that some people on this site are bullies.

Marvene1942
Marvene1942
in reply to Hidden

I was on Premipexole for about 8-9 years and then the augmentation started. It was terrible. I couldn't sleep. I ate like mad and put on about 30 pounds. I also started gambling. It did work for all those years. I hope this doesn't happen to you. Now I am on Gabapentin 300 mg twice a day and it works for me. Good luck to you and I hope it always works for you. Marvene

YodaDog
YodaDog
in reply to Hidden

I read the comments on this site regarding RLS religiously and I very rarely read people saying they don't agree with augmentation. Perhaps you could enlighten me? Also, Claire mentioned that she has had to increase her dose from 1 pill, to 2 and now to 3 and if she doesn't she gets symptoms during the day as well as the evening and she gets it in her hands as well as her legs. It's pretty obvious that she is suffering from augmentation. What would you put those things down to? She can't and shouldn't keep increasing the dosage and I would agree the only way moving forward is to carefully come off the prami. Finally, if you read all the posts in this RLS section you would see that in many, many posts Manerva gives way better advice to the posters than many doctors do to them. I am very grateful for Manerva's contributions to this forum, he dedicates much time and effort and keeps himself updated with latest developments.

Hidden
Hidden
in reply to YodaDog

I'm not going to attempt to advise Claire about her RSL. I don't know anything about her or her medical history. I happen to think that it's helpful for her to hear what works for others - after all, it might work for her. I think that it's a very sweeping statement to say "Manerva is better than any doctor", but if he helps you, fine.

YodaDog
YodaDog
in reply to Hidden

If you read my post again you will see that I didn't actually say "Manerva is better than any doctor". Plus it did help Claire for a while, but then she had to increase the dose. Twice. No-one should just keep going on increasing the dose, there are limits to medication dosages.

Hidden
Hidden
in reply to YodaDog

I apologize - you actually said that Manerva knows more than MANY doctors. Well all that I can say is that I've been taking 750mcg pramipexole for the past 5 years. My RLS is controlled (not perfect). BUT - I'm certainly not suggesting that everyone will benefit from it because each of us reacts differently to drugs. It really is a matter of trial and error since nobody knows what causes RLS.

Manerva
Manerva
in reply to Hidden

It appears that at this point it might be a good idea to stop replying to this thread.

This thread was started by someone withdrawing from pramipexole, presumably because of augmentation.

Claire also indicated suffering from augmentation.

It's true that some people may never suffer augmentation, or at least haven't as yet

In that case, it is their right to choose to continue pramipexole if they wish.

However these two members are suffering augmentation and it's clear in their case that pramipexole is not working. The literature is fairly clear about how to deal with augmentation when it occurs.

Naturally, everyone is quite welcone to share their personal experience on this site. Everyone is also at liberty to express an opinion.

However where that opinion isn't relevant to another members situation or appears counter-productive and isn't helpful, then other members are entitled to challenge it.

This shouldn't be considered to be bullying

I hope that both the members who've indicated in this thread that they have augmentation have benefitted from it, i.e. in gaining information about and encouragement in dealing with their augmentation

Hidden
Hidden
in reply to Manerva

But my opinion IS relevant to other members situations. Just as yours is. You're very much against pramipexole under any circumstances. You advise against it. I think that it's important to let members know that it is a good drug for some people. That is all. Please don't tell me what I can reply to. You don't own this site.

Hidden
Hidden
in reply to Hidden

I have to agree..Sifrol works so well for me.

Hidden
Hidden
in reply to Hidden

Thanks for your reply. I'm sure that Sifrol works well for many people. I don't like the idea of it being rejected out of hand when it's so helpful in many cases of RLS. If it doesn't work, doctors will suggest something else.

Manerva
Manerva
in reply to ClaireG0208

Hi Claire, Madlegs appears to be correct, you are showing the signs of augmentation which is caused by the pramipexole.

I'm not sure what dose you're taking since there are several different strengths of tablets. The usual ones for RLS are either 0.125mg or 0.25mg.

Three 0.125 mg is above the ideal dose for RLS as the higher the dose the greater the risk of augmentation.

The only really effective way of combatting augmentation is to reduce and/or stop taking the pramipexole. It's also preferrable to avoid any other dopamine agonist (DA) e.g. ropinirole or rotigitine. This is what RLS experts advise.

Since you may need to continue to have some medication for your RLS it would seem logical to replace the prami with an effective alternative rather than continuing on the DA. Since alternatives exist I would suggest you ignore anobody who implies that continuing on the DA is worthwhile.

Please do not stop taking the pramipexole suddenly, this is dangerous and can lead to serious withdrawal effects.

I suggest you read more about augmentation, stopping taking a DA and alternatives before taking any action.

Like myself and many others who have suffered augmentation and managed to withdraw from taking a DA, you may find that doing this will bring about signficant improvement in your symptoms.

If you continue to take pramipexole, increase the dose or switch to another DA, then it is likely your RLS will continue as it is, or get worse.

here's a link

sleepreviewmag.com/uncatego...

Hidden
Hidden
in reply to Manerva

I always stop prami immediately when I augment and take tapentadol for 1 week and then straight back on prami...no augmentation...goes against all the so called experts.

Joolsg
Joolsg
in reply to ClaireG0208

Clear signs of Augmentation Claire. If it’s moved to other body parts- that’s augmentation. Please don’t increase the dose. You’ll just make the RLS more intense. It moved to my face after my hands- complete nightmare because you cannot move to make it stop.

I reduced slowly ( but not slowly enough) and life is so much better. No afternoon RLS and I no longer get it anywhere except my legs and only at nighttime. 15 years on dopamine agonists has permanently damaged my dopamine receptors and so I will always have it. If you get off it now, you may not have the same problem and you may find you can control it by raising serum ferritin above 100.

Thank you my doc now has me on a low dose of clonazepam at night with the mirapex and at least it relaxes me enough to get to sleep during the augmentation. Because as soon as 15 mins after taking mirapex my legs and or arms start to feel like they are charged with electricity and it lasts 2 hours! I get up and down, pace and walk but I'm so groggy I can barely walk safely.

Manerva
Manerva
in reply to Mirapexhell

Hi, sorry to say, clonazepam will only take the edge off your symptoms and it isn't really a viable long term solution.

If you're suffering augmentation, then the best solution is to reduce and stop taking the pramipexole, since it's the pramipexole that's causing it.

I'd suggest you ignore any remarks made by anybody who implies that this isn't necessary.

I nave no intention of criticising your doctor, doctors receive little or no education about RLS amongst all the other things they have to learn, but the best way to treat a condition caused by one drug, is NOT to add another potentially harmful drug.

Heres a link to an article written by an internationally reputed RLS expert.

sleepreviewmag.com/uncatego...

Please do not attempt to stop taking pramipexole without first finding out how to go about doing this, it can be dangerous.

HiddenThis reply has been deleted
Joolsg
Joolsg
in reply to Hidden

Well Manerva is giving advice based on consensus of the top RLS experts in the world.

You are extremely lucky that you have no RLS and no augmentation symptoms.

Switching DAs only works if there has been no augmentation. Drug holidays are also used by some people with RLS, but again, once augmentation has set in, they won’t help.

When RLS moves to other body parts and becomes more intense,those are clear signs of Augmentation and the only solution is to get off the DA anx onto another med.

So many people on here have come on suffering terribly and have managed to get off DAs with the help of the people on here.

The overwhelming majority of doctors and neurologists have very little or no knowledge of RLS, augmentation or how to safely deal with DAWS.

You are extremely lucky and rare to have a doctor with any knowledge.

We have had people on here who are suicidal because their doctor had them on 12mg of Ropinirole.

Manerva writes from bitter experience and his advice is invaluable.

LotteM
LotteM
in reply to Hidden

Otbie, we are all different. The experience from people on this forum is the basis for many of the answers and advices on this forum. Having read all the other stories for more than 4 years now, you and your doctor have found a treatment that works for you. Enjoy. But don't make the mistake that because it works for you two ( and maybe several others) it works for everybody. The variety of experiences in more or less effective treatments is mindblowing.

Personally, I tried something similar as you and your doctor do, but with ropinirole and tramadol. And I had only been on a low dose of ropinirole for a short time (less than a year). I had to revert to the tramadol after increasingly shorter periods on the ropinirole. This approach proved itself ineffective for me within a few months. I hope it lasts very long for you and your doctor.

And indeed, not everybody stops a dopamine agonist after augmentation. Some (=a few) people find that a lower dose stops the signs of augmentation while regaining most of its effectiveness, other switch effectively to a longer acting dopamine agonist. Some people add another medicine, like an alpha2delta ligand or a low dose opioid. But we never know how long these alternatives lasts. Many people here on the forum had many good years on a dopamine agonist initially. And maybe many will have another good run with the aforementioned alternatives. We don't know. Not many report that. What we do know is that many people return here for support and advice because these alternatives quit being effective. And most of us for whom augmentation, the phase that we didn't yet know what it was and ploughed on, and the subsequent withdrawal was severe ('hell'), don't want to go there again.

Finally, most people on the forum are in the UK. They have great trouble to get prescribed the licensed Targinact or other / similar opioids such as oxycodone or methadone. So for them, your in itself valid option, is not a feasible option for them. Tapendatol is not often mentioned in relation to RLS.

Heatherlss
Heatherlss
in reply to LotteM

LotteM You are bang on point. At some point, all alternatives stop working. It is better to find out that increasing the dose is not the answer. As it is the withdrawal is pure hell.

I am sure many, including me, wish they had never been put on Dopamine Agonists.

Withdrawal can be too hard. Trust me Hidden. I have failed thrice in my attempts to get off them. I just can't.

I think all that people here are trying to tell you is to keep these facts in mind. Long may your relief last.

Hidden
Hidden
in reply to LotteM

If you do not know anything about Tapentadol...notice the spelling....with regard to RLS, why are you poo pooing my comments? Tapentadol is a superior opioid to tramadol so I cannot see the point on commenting on something you know nothing about.

LotteM
LotteM
in reply to Hidden

I am not aware that I poo pooed your comments. I surely did not intend to. I have given additional information plus my own experiences. That is all.

pdpurdy54
pdpurdy54
in reply to Manerva

I have augmented with mirapex .025X3/day. I’m losing it! I take an antidepressant and I know that’s what is causing my RLS. I don’t know what to do!!! Or how to go about getting off the mirapex. Help!

Joolsg
Joolsg
in reply to pdpurdy54

Hi pdPurdy,

It would be better if you wrote a new post asking for help. Only the people following this particular post will see your comment.

As you are on a very high dose of mirapex and an anti depressant and suffering augmentation, the first thing you should do is ask your GP for help getting off the anti depressant. Trazodone and Wellbutrin do not make RLS worse so they might be options.

Which anti depressant are you taking? SSRI and SNRI are problematic for RLS Sufferers.

Hidden
Hidden

Thanks for sharing!! I'm glad you're RLS is much less pronounced. Since there is no cure, "much less pronounced" in my mind is the best we can hope for.

If you are still taking the rotigotine patches that is your problem. Get off of them as they will cause augmentation and not allow you to get the affects of the gabapentin. I have been on requip and the rotigotine patches and after augmenting they ALL kept causing me to augment. I currently take 2 pills 600mg gabapentin each night so 1200mg total without any DA and i am able to finally sleep mostly through the night. I spent months sleeping in the bathtub before I got off the DA's. The key is getting off all DA's. If you can get a opioid it helps. I take 2x600ms Gabapentin each night and an opioid. It has changed my life and saved my life.

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