Starting on Ropinirol: and got really... - Restless Legs Syn...

Restless Legs Syndrome

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Starting on Ropinirol

AnnikaA
AnnikaA

and got really scared when I read about it here. Doesn’t anyone has good experience of Ropinirol?

I have been on Pramipexol for many years but it doesn’t work anymore due to the augmentation.

Started on Gabapentin a year ago and that has been a really bad experience for me - sooo tired all the time that I could not function at all.

Back on Pramipexol and the augmentation started almost immediately. My GP sent me to a very experienced neurologist and he prescribed Ropinirol. But after reading here I feel scared to start

I am worried to be tired again. I am sensibel to any medication. I have high ferritin levels, actually too high according to my GP.

If Ropinirol doesn’t work the neurologist said I could try Madopark in the next step. Does anyone has experience of that?

I live in Sweden

Madopark

53 Replies

After augmentation (Pramipexole in your case)it is not wise to switch to another dopamine agonist (ropinirole) or dopamine precursor (Madopar). Your neurologist is clearly lagging behind in knowledge.

Can you tell us more about your experiences with gabapentin? Amount and how long your tried ? It may help to get an idea whether pregabalin would be an alternative option or whether you'll have to go for an opioid. That is the medication route.

There are people that do without, but that depends on the severity of RLS and their life circumstances whether that is doable or not.

AnnikaA
AnnikaA in reply to LotteM

I gradually increased the dose of gabapentin til 100 in the morning 200 at lunch and 300 at night.

Got severe brain fog and just wanted/needed to sleep all the time

SueJohnson
SueJohnson in reply to LotteM

I agree that it is not wise to switch to another dopamine agonist. You'll likely end up with the same problems.

Hi! I just in read your message; I have been onRopinirole for a while. Have heard all the “horror” stories but you know what? Not one of those “naysayers “ has to put up with MY legs! I don’t just get RLS at night! I can get it

at any time, be it when I’m driving, in the grocery store , just trying to rest. And, I also talk Gabapentin for my back pain (1800mgs/daily). I’ve heard a lot of people on here give there opinions about all sort of medication but to my knowledge they are not physicians. We all just share our experiences.

And most of it is good information. But, if you

have any questions about your medication that’s why your doctor is paid the big bucks for! And if he won’t answer rat may be time to find a new doctor!!!

Thanks. Do ropinirol Help you with RLS?

YES!!!! I didn’t start to get “bothered” by RLS until I was diagnosed with MS. On occasion, yes, but not a big deal. But, within a very short time it (RLS) seemed to take over my life (along with MS). Could I have managed without taking Ropinirole? Without losing what little sanity I had left? I don’t know but what I do know I am NOT concerned with longterm effects. #1. I will be 70 in a few months #2. What years I have left I have no intention of being miserable when there are alternatives that work for me. If I were younger I may have thought differently. That is a decision you and your doctors need to discuss- and follow whatever course of action works best for you.

Joolsg
Joolsg in reply to Midnight-Blue

Many of us have had your RLS issues- that’s augmentation for you.

Get off Ropinirole and the RLS in the daytime disappears.

Honestly- it’s terrifying to contemplate getting off it but it’s the best thing I ever did. I can sit quietly in the day now.

I apologise in advance for contradicting you. I hope you find what I write helpful.

Many RLS sufferers complain that they've had to put up with severe symptoms and not just at night, but throughout the day. These include involuntary movements, painful spasms and inability to sleep.

That was my own experience for years.

This is known as augmentation and is well recognised and documented by health authorities.

It is also well documented that this is caused by dopamine agonists and more so by levodopa (as in Madopar). It's also accepted that the most effective treatment for augmentation is to stop taking the dopamine agent.

If you are currently describing what you write and are still taking ropinirole, then it appears you are suffering auigmentation caused specifically by ropinirole.

It's not as if dopamine agonists are the only medications that can be used for RLS. International authorities on RLS now recommend that alpha 2 delta ligands be used as a first treatment for RLS. Dopamine agonists are no longer recommended because of the high risk of augmentation.

Gabapentin doesn't work for RLS however, whilst still suffering augmentation from a dopamine agonist.

There are alternatives.

You may find your own situation is considerbaly improved by weaning off ropinriole, or any dopamine agonist and taking an alternative.

Mike-tyson
Mike-tyson in reply to Manerva

Been taking Gabapentin for RLS for months now suplimented with Magnesium Butter applied to bottom of my legs and ankles before I get into bed. The RLS has almost completely gone so it works for me.

I take 300mg Gabapentin at night. Before getting into bed 😊

Sadly the neurologist doesn’t know about RLS.

Dopamine agonists should not be prescribed once you’ve augmented.

The only solution is to get off them very slowly and switch to alpha2delta ligands or an opioid.

jollyjune
jollyjune in reply to Joolsg

what are alphlgands

Joolsg
Joolsg in reply to jollyjune

Alpha2delta ligands are Gabapentin, pregabalin (brand name Lyrica in US) & Gabapentin enacarbil (only available in US - brand name Horizant)

AnnikaA
AnnikaA in reply to Joolsg

So it seems, sadly, that he doesn’t know enough about RLS 🥺 At least he was very thorough about investigations regarding epilepsy- let me take all possible test and examinations to rule out epilepsy 👍🏻

Joolsg
Joolsg in reply to AnnikaA

It is very sad. In every country in the world this happens. Neurologists & doctors know very little about RLS- it isn’t taught at medical school & we are badly let down.

Maybe with the worldwide tragedy of Long Covid there will be more research into little understood diseases.

In the meantime we have to educate ourselves & read all the research papers.

Hi, just to reiterate what Lotte and SueJohnson say, that is if you've suffered augmentation from taking one dopamine agonists then you're very likely to and very quickly suffer augmentation from another.

There are horror stories about dopamine agonists and the horror stories are true. The main horror is augmentation, there are other horrors too.

It's a shame that many people taking them have never heard of augmentation and don't even recognise that they have it, even when they do. It is hard to accept that a medicine which may have been helping for some time is now doing more harm than good. It's also difficult to accept that doctors. the people we rely on to be medical authorities aren't as omniscient as we'd like them to be and that "lay" people can actually be a more of an expert on a condition they have themselves than a doctor can.

As regards gabapentin. It does seem logical that if you're suffering augmentation and hence symptoms during the day, then you take gabapentin during the day. Certainly for other conditions e.g. nerve pain or epilepsy, gabapentin is taken 3 times a day.

However, if augmentation is resolved (by stopping dopamine agonists), you shouldn't get (so many) symptoms during the day and gabapentin can be taken for RLS only at night.

In fact, it's recommended that you only take it at night. One of the reasons for this is that it can make you drowsy. It's OK to be drowsy at night.

The other thing about this is that such symptoms may settle down after a few weeks.

What I'm suggesting is that if you take gabapentin during the day, but give up on it after only a couple of weeks, (if that's what you did) then you may be doing yourself a misfavour.

Try taking it ONLY at night for at least 4 weeks.

PS I wonder what the neurologist was experienced in?

AnnikaA
AnnikaA in reply to Manerva

Hi thanks for your commitment. I think some of the answerers mix my question up with one of the answers (from ”midnight-blue”)

I dont have symptoms in daytime, only at night.

Interesting that you all say that I shouldnt go från pramipexol to ropinirol. And your suggestion to only take gabapentin at night seems like a good idea. Would you suggest 300 at night then?

PS I forgot to mention. Two other measures for dealing with augmentation.

1 Iron therapy. Have a blood test for ferritin, if it's under 75 start taking an ora iron supplment

more information here

sciencedirect.com/science/a...

2 Check if any other medications you're taking are known to mke RLS worse. This is mainly antidepressants or sedating antihistamines. There are many others.

AnnikaA
AnnikaA in reply to Manerva

I actually have a too high ferritin level.

But surely other medications can make it worse, both antidepressants (escitalopram) and maybe hormon treatment as well? Estrogen.

AnnikaA
AnnikaA in reply to AnnikaA

And antihistamins.

Manerva
Manerva in reply to AnnikaA

Sedating antihistamines can make RLS worse.

This doesn't tend to happen with non-sedating ones.

Manerva
Manerva in reply to AnnikaA

Hi, in explanation of any apparent mix up, you did say you had augmentation and I also wanted to correct any misimpressions that other people might have given you . e.g. as if the horrors of dopamine agonists are just a story.

I confess to not knowing what a too high level of ferritin is but I'd say anything under 450 is OK. An ideal level is at least 200, some RLS experts say 350 is better.

The key test if there is a too high level of ferritin is a transferrin saturation test. If this is over 60% you would be at risk of iron overload. One explanation for ferritin being too high, or at least higher than normal, is that you have some inflammation somewhere, particularly bowel inf,lammation. This can skew ferritin levels up.

The inflammation may be sub-clinical, i.e. you may not have any symptoms of it.

I couldn't think why you would be taking gabapentin 3 times a day if you didn't have RLS symptoms during the day, it's not advised for RLS. Once a day is sufficient.

I take gabapentin once a day, at night. I take 600mg. This is a relatively low dose. The average effective dose is 900mg. I'd suggest you take the whole 600mg at night. Hopefully you won't be too drowsy the next day.

You may find that 600mg is not enough. It's a matter of trial and error.

Just to clarify, escitalopram, an SSRI antidepressant, can make worse and should be, if possible, avoided. I'm not sure about Estrogen.

I hope this helps

AnnikaA
AnnikaA in reply to Manerva

Thanks 🙏🏼

Hi. I've been on Ropinirole for more years than I can remember & an extremely high dose, 8mg per night. My GP told me to drop one tablet per week (2mg, due to augmentation. Easier said than done. I admit, for quite some time, Ropinirole did help & I wasn't sleepy through the day & I was able to function properly. Sadly I'm in augmentation & truly bad. I can't stop taking them because of extremely lower back & hip pain so, the RLS is making it impossible to stop medication. They help the "jumping" slightly which, in turn, eases my back etc. Vicious circle. I'm so sorry I can't give a positive account on Ropinirole. It helps to start but, augmentation is the end result. Good luck 🤞

AnnikaA
AnnikaA in reply to Sootired15

🥰

Manerva
Manerva in reply to Sootired15

I can only say that anybody prescribing you 8mg of ropinirole, if not actually negligent is extremely irresponsible. The official maximum dose for RLS is half that. The risk of suffering augmentation at that dose is, I'd say, inevitable.

Furthermore anybody telling you to reduce the dose by 2mg per week is also being extremely irresponsible/negligent.

Reducing ropinirole by any amount usually causes withdrawal effects. Reducing by that amount that quickly is highly likely to cause severe withdrawals.

The slower you withdraw from ropinirole the better. It's better to reduce in steps of 0.25mg (or less) no more often than every 2 weeks, (if not longer).

Weaning off ropinirole is the most effective way of treating augmentation.

Ropinirole will not be helping your RLS or your back, due to the jumping. I can appreciate your apprehension at reducing the ropinirole because you believe it may make the jumping and hence back pain worse.

This may initially be true, but this will be due to withdrawal effects and will be temporary.

There may be a problem when you have entirely stopped ropinirole, in that your RLS may return to how it was before you started it. However, it won't be as bad as it is when suffering augmentation. Stopping ropinirole, if nothing else could improve your situation considerably.

In addition, ropinirole in itself doesn't have any direct effect on back pain so you could do with a medication that does have an effect on back pain.

In which case, an aplha 2 delta ligand, that is either pregabalin or gabapentin may be of some use to you. These medications are primarily licensed for epilepsy or pain. Furthermore they are recommended for treating RLS.

I was prescribed gabapentin for back pain/sciatica in 2018. At the time I was suffering quite severe augmentation due to pramipexole. I weaned off the pramipexole and continued to take gabapentin. Since then I rarely have any RLS symptoms.

An opioid can also help reduce withdrawal effects.

Augementation can also be treated by iron therapy and avoiding any other medications that can make RLS worse e.g. antidepressants and sedating antihistamines.

See this link

sciencedirect.com/science/a...

Sootired15
Sootired15 in reply to Manerva

Thank Manerva. Your knowledge is amazing, I wish my GP knew half of what you do. I've finally received a telephone consultation with a neurologist for next month. I don't think over the phone talks are any good but, I will try decreasing Ropinirole, gradually, starting tonight & see how I go on before my consultation. I seem to have tagged on to AnnikaA's question. I'm so sorry for doing that, it was unintentional. I'm so glad I came across this site. Although I wouldn't wish this awful condition on anyone, it does help to know there are people who understand. 😊

Manerva
Manerva in reply to Sootired15

There's no rule about tagging on to another person's post with your own question.

AnnikaA
AnnikaA in reply to Sootired15

I am glad you taggad on to my question 😉

Ropinerole has been a godsend for me for several years. I haven't ever had to increase my dose. Only for a long plane flight do I need another prescription. For an all-day car ride I just stop the car every few hours and walk around (which everyone ought to do anyway) and stretch my calves. I hope it works as well for you as it has for me. Take it 2-1/2 hours before bedtime.

Manerva
Manerva in reply to long-legs

This sounds great and as long as the ropinirole is woking for you, that's fine.

However, so many people have been prescribed a dopamine agonist, ropinirole, pramipexole or rotigotine without any warning about the severe long term complications that they can cause. This is unethical and I believe some people have taken legal action because of it.

The consequence is also that a signficant number of people have suffered loss of efficacy, augmentation or an Impulse Control Disorder without, in some cases, even knowing these can happen.

Forgive me for writing this, but as somebody currently taking ropinirole, I feel it's a good idea to warn you.

I also write it so that anybody else, who is considering taking a dopamine agonist for the first time may be more able to make the decision.

Dopamine agonists are no longer recommended as the first treatment for RLS and this is due to their high risk of severe complications.

AnnikaA
AnnikaA in reply to long-legs

Thanks 🙏🏼 How much do you take?

long-legs
long-legs in reply to AnnikaA

2 mg a day, extended release. My neurologist says I can take 4 a day, but I only do that when traveling, or some other very unusual situation. I'm good for a three-hour flight. Stretching my calves and avoiding sugar get me through a lot of potential problem situations.

Annika, yes I had excellent results for several years on Ropinerole.. Then one day, out of the blue, it simply stopped working.

If it had simply "stopped working" that would have been nightmare enough, but it demanded I take more and earlier, and suddenly my RLS was out of control.

It became such an evil thing, but providentially I found this site, I just came upon it in my time of need.

With the help of many on here, Manerva, Joolgs, and many others but some whose names escapes me, I understood about Augmentation.

I started cutting down on my Ropinerole very slowly, reducing by a fraction every two weeks. I'm now over halfway and I know things are going to get more difficult, but the doctor has prescribed some Clonazepam to help me sleep.

AnnikaA
AnnikaA in reply to Bond-Powell

My sympathies 🥺 I really hope you will feel better soon

I am so grateful for this site.

Will you stay on clonazepam? Or something else for RLS?

Bond-Powell
Bond-Powell in reply to AnnikaA

I don't know yet. My doctor said that she had recently treated a man who had managed to come off Ropinerole and was managing just on the Clonazepam.Time will tell , but at the moment I am having such relief although my RLS shows itself to a degree each time I cut it down a bit more.

I am glad you have found this site. For me it was purely accidental, but it has been a lifeline to me.

You take care and I wish you success in sorting out your problem.x

Hi Annika, I am in the US. I currently take 4mg Ropinirole ER and Horizant 600mg. I take the Ropinirole tablet about 5pm each night and the Horizant tablet at 8pm so I can sleep through the night. I have suffered with RLS since age 11 and it has gotten progressively worse as I have aged. I am 53 now.

I was on increasing doses of ropinirole, then switched to pramipexole, then went on the Neupro patch. That was the best until I became allergic to the patch and had terrible rash at patch sites. My iron level is being monitored and is above 70.

I am trying to figure life out with RLS just like everyone else. I hope you find something that works. This is just awful and very limiting. I have to keep a pretty strict bedtime routine to avoid nights with breakthrough.

AnnikaA
AnnikaA in reply to Mtn_Grl

Thank you 🙏🏼

Yes, strict bedtime is so important to manage. I had RLS when I was young, then it went away for many years and came back with an early menopause. Same with motion sickness. I wonder why, seems to be connected to hormones.

As a RLS sufferer, I can testify that ropinirole must be used in the least amount possible. Personally, I take 0.75 mg along with a 5mg/325mg oxycodone tablet. This is low dose narco that helps with the side effect muscle aches associated with dopimine agonists.The 325 is tylenol. I have noticed a significant increase in RLS when ingesting anything high in sugar. Avoiding alcohol, sweets, carbs seems to help limit the RLS.

Salty foods, like popcorn or pretzels, tend to stop my RLS if an attack occurs. I have also found that while playing bridge or other games of concentration attacks are very rare. Watching interesting movies without commercials also limits attacks.

I take the meds at 9 pm and generally sleep 8 hours. The opiod allowed me to reduce the ropinirole from 1.0 mg to 0.75.

I might try reducing it to 0.50 if possible.

My best advice is to reduce RLS food triggers and all meds to the lowest dose possible.

Everyone seems to have different experiences with this crazy syndrome.

AnnikaA
AnnikaA in reply to RLSBOGEY

Thank you 🙏🏼

I have noticed the same, no sugar in the evening. And no caffeine of course. I just stopped drinking coffee. But cannot be totally out of caffeine 🥤no alcohol at all for me.

AnnikaA
AnnikaA in reply to RLSBOGEY

And yes, when I do crochet watching TV in the night it is helping me with RLS. Interesting with saltat foods I will try that next time👍🏻

Welcome AnnikaA , I came here to add my horrible experience and opinion. After reading all the excellent comments, I realize you are in excellent hands. Print off this page and give it to your doctor if he has any questions, we are here to help. :-)

AnnikaA
AnnikaA in reply to WideBody

Thanks 🙏🏼

I was on ropinirole for about 20 years, starting at 1mg and ending up at 3 mg. Actually for most of that time everything was great. The funny thing about augmentation is that it is so subtle that you think it is just a worsening of your RLS symptoms, due to aging, so you just keep increasing the dose. Finally, you come to the realization that it is augmentation and you will have to find a new medication, which is difficult, and you will have to go through withdrawal, which is bad. My recommendation would be to continue with the ropinirole but to be very wary of any suggestions to increase your dosage. Usually, the occurrence of daytime symptoms is an indication of augmentation. After going through the withdrawal process I now find myself on 900 mg of gabapentin, which has eliminated most of my daytime symptoms. I still have some rls symptoms as night but it is not so bad that it keeps me from getting some sleep.

AnnikaA
AnnikaA in reply to dklohrey

Thanks for sharing 🙏🏼

I have been on Ropinirole for almost a year. It’s worked good. I’ve had to increase from 1mg to 1.5mg. It can make me dizzy and my heart palpitate. I’ve never tried anything else. Good Luck!!! 🍀❤️

AnnikaA
AnnikaA in reply to Holliday13

Thanks 🙏🏼

When I was first referred to a neurologist here in the UK then he prescribed 0.25mg Ropinirole and it was bliss as I finally slept. However as time went on the RLS would kick in again and so over several years he increased my dose until I was at the maximum of 4mg. This meant that I would fall asleep in front of my computer at work and my arms started "tingling" as well. He put me on Pregabalin for that and it helped. However I was actually suffering augmentation by this time. It took me a year to reduce the Ropinirole and then he put me on Pramipexole which actually worked for several months. I finally bit the bullet and stopped taking dopamine agonists (through tough times and sleepless nights). For the last 2 months I've been on the minimum dose of Temgesic (through my understanding GP) and 300mg Pregabalin. I did try to reduce the Pregabalin to 200mg but my body started jerking again in the night and so I reverted to the 300mg. Now I generally sleep right through.

Re food, I agree that some like sugar, caffeine and alcohol can make it worse. Interestingly I found that too much salt made it worse. These are only generalisations as we are all different, but the key thing is to find out what things make it better or worse for us.

Keep on listening to Manerva and Jools - they have lots of good advice and experience.

I agree with others to stay away from dopamine agonists (DA) or their precursor. I was on 2 srparate different ones over 15 years . At about year 10 O added on gabapentin, which helped for a while but I had to keep increasing using the DA and the gab to very high-level. I managed to reduce both to lower levels again after 5 months using a Relaxis pad at night. But the creep up started again a year later. So, under my doctor's advice. I kept the gabapentin between 400 and 600 mg as I very very slowly tapered off the pramipexole over 6 (miserable) weeks. Stayed on the gabapentin at 400 for 2 weeks, then went to Horizant, a different type of slow release gabapentin (gabapentin encarnabil ( I may be misspelling it) where you take 1 600 mg pill at 5pm with food and thats it. Ivebeen great and controlled,as long as my iron levels have remained high normal (required325mg ferratin supplements and 250 mg Vitamin C to do that) for 2 years now.

Good luck.

Hi Annika. I was started 3 yrs ago on pramipexole and immediately found it intolerable. I was switched to requip and it worked for a years or so then the augmentation started. My GP let me try putting low dose morphine and requip during the day together and low dose morphine and gabapentin together at night and I have been stable for almost two years now. I take the ropinerole .25 mg spaced out during the day usually 3 hrs appart up to a total of 1.25mg for the day. The morphine seems to work with it any I have had no augmentation since taking it with ms. Contin 15mg. I know every one thinks OH! I will get addicted to the morphine. How I found the morphine really helps, I ended up in emergency with a large kidney stone and from having recieved straight morphine for the pain I went 5 days with no rls. Worth looking at I think.

Annika, I am in my late 70's and have had RLS for about 25 years and have tried almost every regimen possible with the help of a wonderful neurologist. (by the way, gabapentin makes my hair shed like crazy, after two trials several years apart.) Anyway, I have finally settled into a routine of only using ropinirole, 3x a day at a dose of .5 mg each time, upon rising, mid afternoon and at bedtime. I've done this now for almost five years, with no augmentation and feel blessed to have what seems a solution. And I know I still have RLS because on the rare occasion I should forget a dose, the creature starts to return. I tell this story just to say that sometimes it is possible to have success with ropinirole, perhaps if used carefully.

AnnikaA, I started taking an SSRI 30 years ago and experienced RLS occasionally. I added a hormone replacement regimen 16 years ago and my RLS became chronic. I started taking a small dose of Ropinirole. At that time I had never heard of augmentation. Starting Ropinirole was the worst decision I ever made. After 13 years I was up to 8 mg each night just to be able to survive the night. I couldn’t even sit still during the day much less lay down to take a nap, ever. On visits to the dentist I had to take a pill an hour before. The Ropinirole make the severity of my RLS skyrocket. That’s when I read about augmentation and found Dr Buchfurer here in Southern California. 2 1/2 years ago I sought his help to get me off Ropinirole. His treatment is to have you stop cold turkey and take only opioids. I tried that for 5 weeks but got deathly ill from the opioids and had to return to Ropinirole although I went down to 4 mg a night. Then after some iron infusions I went down to 2 mg. But the augmentation started again and I consulted Dr Buchfurer again this last November. He convinced me to try the opioids again. I tried for 6 weeks and again got deathly ill. So back to Ropinirole again. I was devastated. The only good thing is I am now down to 1 mg. Although it’s not quite enough I refuse to take any more than that. But it really doesn’t matter how little I take because augmentation will come back. I will not be happy until I am completely off of this horrible drug. I regret the day I heard of it. I am no longer on the SSRI nor the hormone replacement so I don’t know what my experience with RLS will be if I am able to drop the last mg I am taking but I am on a mission to find out. There is nothing I want more than to be free of this drug. I have tried Gabapentin but it does nothing for me. I wish you luck on your journey whatever you decide.

Thanks everyone YOU WERE RIGHT TO WARN ME!!! Have tried ropinirol for 3 weeks and NO I am not taking it more due to side effects.

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