Hiya, can I, politely, obviously- ask why people object so much to Ropinerole. For me it is a lifesaver. Literally cannot live without it. I know that I am addicted but so are people to Diet Coke and so on and so forth, there are many other medications with side effects which are necessary to maintain a sense of normality? Am I completely off track here?
Why the moaning about Ropinirole? - Restless Legs Syn...
Why the moaning about Ropinirole?
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Dane74
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Do some reading on this forum, and focus on dopamine agonists (DA) such as ropinirole and pramipexole and pay attention to the issue augmentation. You can start with the pinned posts. But there are many many many others. And then answer your own question.
Also, it is unlikely you are addicted, most likely dependent. Semantics maybe, but the feel is different.
I know what you mean, but choices are limited in terms of what pain relief works for RLS, I know all about augmentation, have been on codeine for 20 years for chronic migraines..
I mean no disrespect, but do you? Ropinirole is no longer the preferred first option for pharmacological treatment of RLS. Assessing iron status and raising ferritin to normal high values (>100 or even >200), evaluating other potential causes and medicines that should be avoided are.
See the recently updated guidelines: mayoclinicproceedings.org/a...
Each to their own LotteM, it has been a relief for me. Went without last night and will tonight as well, and know I will not get any sleep whatsoever. Working 50 hours a week I do need just a little bit of sleep so I take what helps, might be stupid, but I don't think so..
It was initially a relief for me too, Dane. Just do like I did. If it starts to fail, do NOT increase the dose, because then you will be on a path to disaster. Rather, decrease. I really hope the ropinirole continues to work well for you, as indeed it is a miracle medicine. Just make sure you are well informed and know the telltale signs of augmentation. In my experience it starts with tolerance, that is the ropinirole no longer works as well as it did initially. I had that after three weeks already. Some others last as long as several decades. I hope you fall into the latter group. Sleep well!
Totally agree I had to go without mine the other night. Awake all night totally frustrated crying all night. The doctor wanted me to stop taking it isaid there is no way my life would be over x
After taking ropinirole for a while you become dependent on it physiologically. If you stop taking it you will get withdrawal effects.
With ropinirole these witjdrawals can be very severe and can start 24 hours after the last dose Hence if you miss a dose - forget sleep.
This is due to dependency..
Your doctor may be right, you should consider stopping it. If you continue there's a high probability of developing augmentation.
Pethaps what your doctor haxn't told you is there are effective alternatives to ropinirole with less risk of augmentation.
Read this link
Find what works for you and be at peace with that decision. I used pramipexole for several years and went through augmentation and it was HELL. LotteM is right... watch for telltale signs of augmentation and then stop and re-group. I've been taking Ropinirole for 4 or 5 years with no issues. I've also suffered from chronic pain for about 5-6 years. So at night I will take a hydrocodone with Ropinirole together and I am able to sleep very calmly.
RLS is NO joke and the side effects and consequences of having it are far worse than the side effects of the Ropinirole, in my opinion.
Am I ignoring new research about RLS? Absolutely not. I am, however, looking for quality of life and for now Ropinirole is helping me achieve that. I also have an unusual medical condition where I store too much iron (ferritin) in my body and need regular phlebotomies to bring the ferritin DOWN to acceptable levels...(hereditary hemochromotosis) so it's a balancing act, to be sure! (go figure!) and I take magnesium baths, etc. whatever may be a solution. So I'm open to any type of treatment.
But, bottom line, do what helps you stay sane.
The reason many people object to it will probably because they have suffered augmentation. This is NOT a simple side effect, it is a major complication.
Ropinirole, like all dopamine agonists can be great at first but they all have a high risk of aumentation.
That's why dopamine agonists are no longer recommended as the first treatment for RLS.
If you are taking ropinirole and it's working then that's OK. However when it starts to fail, it's a common error to increase the dose. This leads to augmentation.
When I suffered augmentation, I experienced intense RLS symptoms including involuntary movements which were sometimes quite violent.
This would happen within seconds of sitting still or lying down and would happen almost any time of day. It affected my arms, shoulders and torso as well as my legs. I was sleeping no more than 3 hours, every night.
When I learned that it was the dopamine agonist that was causing it, I slowly reduced the agonist and finally stopped it. The augmentation disappeared!
For me, once I knew that it was the agonist causing what was quite a poor quality of life, it only seemed logical to stop taking it.
I have discovered since that this is the recommended action.
I note you say you know about augmentation you have been on codeine for 20 years. I think from this what you mean by the word "augmentation" is not what I'm writing about.
The full name of the condition I'm referring to is "dopaminergic augmentation" and it has no association with codeine.
I also note you say what pain relief works for RLS. This is a bit of a misconception, painkillers generally do not help with RLS. Ropinirole is not a painkiller.
Opioids such as codeine work for RLS but it's not because of tbeir pain relieving properties.
I also note that you don't appear to take ropinirole every night. Missing a dose is really not a good idea. It's highly dependency producing and if you stop taking it, you will experience withdrawal symptoms within 24 hours of the last dose. Hence sleeplessness.
Over a few days withdrawals get worse. They can also become very severe.
If you really want to reduce how much ropinirole you take then it's better to reduce the daily dose, but continue taking it every day.
The first treatment now recommended for RLS are the alpha 2 delta ligands, pregabalin or gabapentin. These do work for RLS, but they're also used for nerve pain, epilepsy and, I believe, migraines.
These have a much lower risk of augmentation. The question is, if you have two options for RLS, one with a high risk augmentation
and the other with a low risk. Why choose the high risk option?
I would emphasise everything Lotte says. If you're happy to carry on taking ropinirole then, when it fails do not increase the dose. If your RLS gets worse, then reduce the dose.
See this link
pubmed.ncbi.nlm.nih.gov/274...
Also see this post, only written today.
healthunlocked.com/rlsuk/po...
I appreciate your input, thanks. My pharmacy shut unexpectedly due to Covid hence no Ropinerole for 2 days whilst waiting for another to process prescription. My GP tried to get me of codeine several times however everything has failed and she described that as augmentation so I obviously go by that, the side effects, trials and tribulations. So far I haven't increased the dosage of Ropinerole and have had some side effects of taking it, but nothing major. Sorry to hear what you went through
I take 800mg of gabapentin a day. 1600 in morning and 1600 at bedtime. It does not work for me anymore and I am at the highest dose you can have. I have took more than I am suppose to and have a good night, but i cannot do this anymore. I am afraid of dependency. I have violent leg movements. My legs jerk at the knees and jerk my lower legs violently. I am not sleeping at night even though I am exhausted. I just had cervical disc surgery and was put on zanaflex. I wonder if this is the problem. I have not took it today. Will see what happens.
Any spinal surgery will trigger a worsening of RLS.Can you clarify your gabapentin dose? Why do you take in the morning? Most people with RLS take gabapentin only at night.
Try taking 3/4 of your dose at 9pm and the rest just before bed. If changing the timing doesn't help, discuss low dose opioids. They are safe and highly effective ( if no history of abuse).
I am confused about how much gabapentin you are taking. 1600 + 1600 = 3600 which is the maximum you should take, but you say you are taking 800 mg. You should take 400 mg 6 hrs before bed, then 600 mg 4 hours before bed and then 600 mg 2 hrs before bedtime because it is advised to take no more than 600 mg at a time because of the less absorption. I take 1500 mg at night this way. If you don't really need it in the morning, but only really need it at night, you might want to switch to horizant since it would be hard to effectively take that much at night.
I am confused by your gabapentin dose.
Yiou say you take 800mg, but then say 1600mg morning and 1600mg at night that's a totl of 3200mg, not 800mg.
This exceeds the maximum recommended dose for gabeptnin for RLS.
One possibiity for it not working so well is that you've actually lowered the effective dose by splitting it morning night.
If you did this because you started getting symptoms earlier in the day, then you may be suffering augmentation.
Another possibility is that theree is little point increasing the dose of gabapentin above 1200mg because of the absorption properites of the drug. The more you take, the less you absorb. If you take 300mg you will absorb 80% of it. If you take 1600mg you probably only absorb 20% of it.
Some sums. take 300mg absorb 240mg, take 1600mg absorb 320mg.
For this reason, if 1200mg gabapentin isn't working then it's better to switch to pregabalin as this is more easily absorbed, i.e. 90% is absorbed whatver the dose.
Since whoever prescribed the escessive and probably pointless dose of gabapentin is proabably quite ignroant about the management for RLS then I assume also that they haven't discussed iron therapy with you, nor the avoidance of aggravating factors. These two are improtant part form drug therapy.
It does sound overtall as if the alpha 2 delta ligand, gabapentin is no lionger working gor you, so the other i.e. pregabalin may not either.
In which case you have two options.
One is to reduce the gabapentin and add a small dsoe of a dopamine agonist or a low potency opioid, e.g. codeine or tramadol. If sleep is a problem you can add a benzodiazepine.
OR
As Jools suggests your next option is to seek a prescription for a low dose high potency opioid, oxycodone, methadone or buprenorphine.
In the meantime you may wish to start reducing the gabapentin.
in reply to Elffindoe
Suffering augmentation from Gabapentin ?
Elffindoe in reply to
I know, I doubt it myself, but
a) there are members of this forum who claim gabapentin can cause augmentation.
b) a while ago I read a study comparing pramipexole and gabapentin. It said that they were equally effective. However it did say that some of the subjects taking gabapentin reported augmentation.
Not as many as for pramipexole, but not the "none" I'd expected.
I guess then it may be a possibility although I can't see how, it's can't be dopaminergic augmentation!
Elffindoe in reply to
Correction
It wasn't a comparison of pramipexole and gabapentin, it was pregabalin.
Here's the link
nejm.org/doi/full/10.1056/N...
Quote -
"The rate of augmentation was sigificantly lower - - - for pregabalin than for pramipexole .... "
It doesn't say there was none.
Thank you for your post!
Hi. I have been on Ropinerole for around 20 years and in the beginning it was a life saver. But, over the last year I have had to increase my dosage taking it in split doses at dinner time and bedtime time. Unfortunately I am now experiencing augmentation and having attacks during the day. I find it impossible to sit down for any length of time without the symptoms kicking in. I have found also now with a higher dose I tend to feel very nauseous. I am now trying to wean myself off Ropinerole which is proving very difficult.
Oh good luck to you sincerely I went through augmentation and it is the worst thing in the world.
Go slowly. 0.25mg every 3 weeks. Ask for an opioid like tramadol ir Oxycontin to deal with withdrawal symptoms and start your replacement meds about 4 weeks before you drop the last dose. It's hellish but your RLS will reduce in severity once through withdrawal.Good luck and keep us updated.
How much ropinerole were you takeing
How much ropinerole have you been takeing
Quite concerned now as my GP prescribed this for me yesterday due to suffering for over 20 years. Had a lengthly discussion with the GP about it due to all the other meds I'm on and all my other health conditions and this seemed the safest option. Wondering if the pharmacy will give me the script when I go to collect Monday.
Did your GP do blood tests and advise you to raise ferritin above 100? And did he/she warn you about Impulse Control Disorder and Augmentation? Read up on these before you start Ropinirole and if you decide to go ahead, start on a really low dose and don't go above 1mg.
Iron was checked 2 days ago & is fine (iron & vit D level is monitored very closely for other health issues). Blood pressure also done 2 days ago (never had a problem with blood pressure & again, checked regularly). She did mention about the ICD. I am to start on a low dose and gradually build up (if needed) over the space of a month depending on results, tolerance & effects v side effects. Was told I could go up to 4mg daily if needed(!) but hopefully these pills will knock it on the head, or reduce the RLS before it comes to that stage. I have always been able to put up with the PLS in the past but for the last 6 months it's been every night without fail, often starting late afternoon & is also affecting my arms now. That coupled with my other health problems...I've kind of had enough now & feel it's time to try and start tackling this.
'Fine' for people without RLS is 15. You need it above 100. Ask for actual numbers.In the UK, GPs are not taught about RLS. They know zero.
They look up meds for RLS in their prescribing book and see Ropinirole - up to 4mg.
However, Ropinirole is a dopamine agonist and the top experts in the USA have always stated the maximum dose should be 1mg.
The new algorithm from the Mayo clinic states dopamine agonists are no longer first line treatment because of the high risk of Augmentation. 8% a year. Every year you take Ropinirole that risk is cumulative. After 10 years, 80% of people will suffer Augmentation. However, you could suffer it very quickly- that's why it's essential to keep the dose at 1mg or lower and if it stops working, slowly reduce.
There are better, safer meds but UK GPs have no training or knowledge.
I strongly advise you to do your own research, read everything you can. The more you know, the better treatment you'll receive because you can direct your GP.
All sedating anti histamines and most anti depressants and cough and cold meds will worsen RLS. So watch out for those.
Raising serum ferritin above 100 will also delay/ avoid risk of Augmentation.
Cheers for the info. I know there are no drug interactions with this & my other meds (have already checked that out myself) & the meds that I DO take don't worsen RLS. Will ask about the numbers for my iron though so appreciate the info on that. Was offered Gabapentin & Pregabalin (which I can't take due to side effects). I don't get physical pain with the RLS just to add but as my muscles, joints, ligaments & tendons etc are absolutely shocking, I DO end up sore if I have a particularly bad night with it.
I wish you years of restful sleep. Most people don't get pain with their RLS but many do.Keep the information about augmentation available so you can watch out for it in the future.
Please say what other meds you're taking. Any one or several of these may be actually making your RLS worse.
It may be possible to eliminate any or replace them and this could have an impact on your RLS.
This is one of the three thbings to do when augmentaion occurs i.e.
1) Iron therapy
2) Identifying and if possible eliminating agrravating factors
3) Reducing and stopping the dopamine agonist and starting a replacement.
Jools gives excellent advice.
None of my meds contribute to RLS as I have cut out all meds apart from Warfarin (which is essential for me regardless), Hydroxy & my psych meds (which are fine also). I only take OTC pain relief & occasionally oramorph now for intense pain. This is me being practically 'med free' (got fed up of side effects & having to take meds to COMBAT those side effects) compared to what I was on 10 years ago, although am going to have to talk to GP about going back on some sort of regular pain med.
Hi thanks for replying.
I note you say "psych meds". This does sound a bit ominous.
If these include an antidpressant or a neuroleptic then I'm afraid these make RLS worse.
Nah, not anti-depressants, they are anti-psychotics but do not have RLS as a side effect, nor increase. Obviously, the fact I have RLS, any med that can potentially make it worse I won't touch.
Anti psychotics worsen RLS sadly.This is the list from the RLS Foundation in the USA.
In case it's difficult to enlarge, the drugs that worsen RLS are:
Haldol, loxitane,mellaril, moban, navane, proloxin, serentil, seroquel, stelazine, thorazine and vesperin.
We had a member on similar meds recently who was in full blown augmentation and went to Slough hospital A&E. The doctors and nurses had never heard of RLS or augmentation or Pramipexole and ws he was so agitated ( inevitable with severe augmentation) they restrained him. That is the WORST possible torture for someone with augmentation and RLS.
Make sure you carry an alert card and notify your GP and hospital that if you suffer augmentation they must never restrain you- movement is essential.
Obviously you need your meds but discuss the full implications with your hospital doctors so they are aware that these meds worsen RLS.
Text
in reply to Elffindoe
Good work, as usual. Put another notch on your bed post.
Have asked my GP to ring me to discuss my iron levels & will mention all of this to him. HOPEFULLY he will take notice & stick me on supplements if need be but you know what many Docs are like, they don't listen because YOU are the patient and THEY are the Doctor. Luckily I am a bit of a bugger & will fight my corner
in reply to Joolsg
Wow, just wow Jools. But for you....
I think you have "paid it forward" to the n-th degree. Another day saved for another soul. "Carry on and let your cape flap in the wind."
Joolsg in reply to
Just had coffee with a friend & was moaning about the appalling treatment most RLS patients receive. We discussed suffragette style action- chaining ourselves to the railings outside the RCGPs annual meeting. I'm serious as well! Did you know Robin Williams committed suicide while on Dopamine Agonists? His widow is now campaigning to raise awareness of these poisonous drugs. Every single help group is full of DA Augmentation sufferers climbing the walls & threatening suicide. When will the medical profession sit up and listen??? I'm in a good place but so many are still floundering & believing their doctors and neurologists are correct. Aaagh. It's like King Cnut and the incoming tide.
I'm becoming more radical the older I get. It's supposed to be the other way round.
I agree!! Change comes so slowly even in the medical community. Awareness and education are lacking with healthcare providers. They don’t understand the torture of this condition or the augmentation/DAWS experience! So sad and very frustrating for those of us with RLS. After I finally succeeded in coming off the ropinerole, my neurologist told me she could always put me back on it! 🙄 I told her I would NEVER go on a DA again and to make sure she put that in my chart! (Pretty sure I came across hysterical and rude!)
I know it’s hard to hold out hope in this challenging journey. I want to thank you for all you’re doing to inform others about RLS! This forum is a lifeline for me and many others!
in reply to RKM7
So how are you sleeping these days?
RKM7 in reply to
Hi Eitheror! Unfortunately had a tough night last night even though I took the iron. I will keep trying since I know it can take time. Thanks for checking!
in reply to RKM7
Well sorry, but that’s unacceptable. The beast must be tamed. Maybe time to add more tricks to the arsenal. Another trick is cream of tartar. A teaspoon mixed in water when the RLS wakes you up or won’t let you sleep. You and I need to verify this treatment. It’s been over a year since I read about it. It’s pure potassium made from residue in wine barrels. For a time there it was all the rage by alternative practitioners for whatever ails you. Potassium is what researchers will use on mice to evoke the release of dopamine so they can see what substance will stop the cascading effect of heroin overdose. But they give the mice ALOT of potassium. Still we need to see how much potassium is in a teaspoon and what the RDA is.
Bottom line is for you to also take steps to up-regulate your receptors, rather than wait around for slo-mo Mother Nature. Are you able to exercise in your exhausted condition? I’ll give you more research to do - look up what types of anaerobic (not aerobic) exercises there are and see if you can do any. They involve short, but intense work-outs like a minute long sprint or running a few flights of stairs. If you’re gulping air you’re there even if you only did one flight of stairs. It will anger your receptors and in the process they will grow big and bad which is exactly where we want them. And supposedly if you’re hungry when you do this then you get even more bang for your buck. As a matter of fact just severe calorie restriction (only eat between sun-up and sun-down too) supposedly will up-regulate your receptors.
As far as the iron goes try opening up the capsules and add to water with a squeeze of citrus or with vitamin c or Quercetin. If I still had RLS after 1.5 hours I’d take a 3rd, but that’s me and that’s 3x the RDA for iron, and now I will be banned from this site for saying that. I refuse to let the beast beat me. I’ll drape myself over a somewhat deflated stability ball if I have to and put on Ben Hur.
in reply to
So a teaspoon of cream of tartar is 495mg while healthy adult females are allowed 2600mg per day …. Per the internet.
in reply to
Hmmm, this article says it works like “magic” for UTIs and RLS. It’s a cute fluffy easy to read article and one that I normally never rely on. If you stay within the RDA it seems innocuous enough. I seem to recall now one women on here had felt like she cured her RLS with just plain old potassium citrate. alivingwelllife.com/a-livin...
RKM7 in reply to
Thanks again for all your help along with articles for more information!! I will certainly read more about these treatments!
I remember several years ago taking potassium capsules because I had read it was effective. I can’t remember if it seemed to help. I tend to try too many ideas at once and then can’t figure what is actually working.
I’m also currently trying a calorie restricted, low glutamate diet so we’ll see how that goes. I’m learning about those dopamine receptors!
For exercise, I’m walking and doing yoga. Seems to be helpful.
I’m also trying split dosing with my Gabapentin. This should also help with getting some longer sleep intervals.
I’m so grateful for your care and shared desire to “tame the beast”!!
in reply to Joolsg
I didn't know that about Robin Williams. I guess it really does require a two-pronged approach. Doctors have to prescribe DAs only as a last resort after all other (better) treatments have been exhausted (which they have yet to do) and we need a near full-proof recovery plan for those withdrawing from the DAs. Then here you are, and numerous people on this site, not only trying to help people, 1 by 1 by 1, with their recovery or warning them off the DAs, but you are also trying to educate the medical community and public at large. I think it would be easier to teach some goldfish about geometry. Stay angry!
It just made my RLS worse after a while. The only medication that has consistently worked for me over the years is the Neupro patch
Everyone who's been on Ropinirole or Pramipexole felt the same when it was working.However, those of us who have experienced augmentation and withdrawal will always be wary of it.
Augmentation creeps up on you and you don't notice until you realise you can't sit still in the cinema or a car and become unbearably irritated all the time.
In my case RLS moved to my arms, shoulders, hands and face!.
The withdrawal nearly killed me ( not an exaggeration).
Also doctors in the UK know ZERO about RLS so when augmentation happens they are unable to advise/help.
Just read some of the horror stories on here and you'll see why Ropinirole and Pramipexole are no longer first line treatment.
If it stops working, don't increase the dose. Keep dose at 1mg or below.
Reduce by 0.25mg every 3 weeks if it stops working and ask for replacement meds.
Oh and make sure serum ferritin above 100 and serum iron above 60 as that can delay augmentation and help your RLS.
Folk on this site are just trying to help each other & give out advice or warnings, honestly. Most folk have an awful version of this dreadful RLS condition & wouldn’t want anyone else to go through what they have. If you’re already taking ropinorole & are benefitting then stopping it now doesn’t appear to me to gain anything …. unless you are already augmenting ( there’s info about what this is ) in which case I’d strongly advise you follow all the guidance about what to do, which includes not increasing the dose which will just make it worse in the long run.
Like all these treatments it was regarded as a wonder drug till the augmentation issue became apparent. As someone else said this is a complication rather than a side effect like eg impulse problems.
I don’t know what proportion don’t ever get augmentation but the realisation of what can happen is why it has been relegated to not 1st line.
Now Pregabalin or Gabapentin are 1st line, not DA’s & work via a different route. For me many years ago Pregabalin was my miracle/life saver/aid to be able to work - but then tolerance kicked in & what felt like what is described as augmentation though I don’t think as severe as with the DA’s. It’s use only came on board I think less than 10years ago ( I was one of the earliest users as took for another reason & found by chance it worked before it was known )
I don’t want to be the bearer of bad news but genuinely most are here to support each other, pass on tips & advice, campaign for research, provide insights which if researchers listen might lead to progress etc.
The problem is no one knows enough about the condition yet, the medics don’t know cos no one knows, no one except a severe sufferer ( not even most mild sufferers I find ) get it at all.
So on this site you’ll mainly get the best care possible. Some of us still need to listen more to our wide ranging views but in general the ethos is we have each other’s best interests at heart.
I wish you well
You give a good balanced view of ropinriole.
Out of interest really there is quite a lot known now about RLS. Accumulated research over the year.
It is known that primary RLS is genetic in origins, although what triggers th gene expression isn't fully identified. Like many conditions that have a genetic predisposition it may take some kind of stressor to trigger it.
The faulty genes appear to cause problems with brain iron metabolism and Brain Iron Deficiency is the main cause of RLS.
Following form this problems occur with three neurotransmitters. The first one found to be involved was dopamine. However it is not a lack of dopamine that causes RLS symptoms, it's a dysfunction with dopamine receptor sites.
More recently it has been discovered that there is an excess of glutamate, another neurotransmitter. More recently, it has been found that a lack of adenosine, (another neurotransmitter), underlies the other two problems.
There has also been reserarch on inflammation which is a mediating factor in RLS, but not a cause..
Where the research is sadly lacking is research into an effective treatment that works consistently without excessive side effects or major complications.
There are problems with the drugs that boost dopamine function and those that reduce glutamate excess.
A drug, dipyridamole, is being trialled as a way of increasing adenosine. If effective, it won't be without problems. It's an anticoagulant.
Iron therapy has been researched as a treatment, but doesn';t work for everyone.
Opioids are known to be effective, but thave their own problems.
The biggest problem perhaps with current treatments is that they need to be applied appropriately and unfortuantely, there is a lot of ignorance around about this. This can be witnessed by readin posts on this site.
As with all drugs, it works for some and does not for others. I am happy that it has helped many who suffer with RLS. However in my case the side effects were terrible, bloating, not a little bloating, so much it looked like I was pregnant, with horrible constant stomach pain. Along with this, my left leg and foot swelled to the point I could not wear a shoe. I was only on it for 6 months. Saw a neurologist, put me on clonazepam 1.5 mg, had been working with no side effects. Stomach issues and bloating stopped, my left foot still has some swelling. Thank goodness there are different meds available.
Don't feel bad at all. You have to do what works for you! RLS is an awful thing to live with so what ever you can do to live a happier life, do it!
Ropinirol works until it doesn't. Then you are stuck. You will be physically addicted to a drug that doesn't work and you will need to reduce the use and eventually stop. That plus some unintended personality changes made the Citizen sue the FDA in Aug of 2019, the FDA capitulated and now there are warning labels on ALL Dopamine Agonist drugs.
It's sad, that so many people had such horrific side effects that the Citizens and to sue the FDA to get action. As other people have said, Ropinierole should be the absolute last drug to use and only as a last ditch effort. The cost of augmentation is too high.
Personally, it destroyed my life and I wish I never heard of Ropinerole or ANY DA drugs. But you do you. Be safe.
moaning? well i would say it's because augmentation is pure hell....
i thought rop. was a lifesaver until i augmented. wouldn't wish that on anyone. maybe you won't experience augmentation.. if that is the case don't worry about it. but if you do, don't let it go too long. and don't just increase dose, worse thing you can do.
Some people get the impulse control issues after dopamine agonist use and this can have severe consequences for the person.
I replied to Dane 74 yesterday and it isn’t showing up on this site. It was quite long and I poured my heart out with my long term experiences with RLS and the treatments I have tried. I went into great detail of this as I have had RLS for many decades. I am just wondering why my reply wasn’t posted. Thank you.
I am sorry your reply to this thread did not appear. I am also sorry that I cannot give you an explanation for why this happened either.
This is my story. I was told by the Dr. that Tramadol was not addictive . I Got hooked on Tramadol and had hell coming off it. I was told Ropinirole was not addictive, was on it a year and then I kept having break throughs. I didn't want to increase the amount, after reading about augmentation here. My new Dr. gave me Pregabalin (Lyrica) and i took it along with the Ropinirole for two weeks. Then I stopped the Rop. and continued with 50 mg. Pregabalin. My Dr. wanted me to start on 100. Since I also had the Rop. along with the Pregab. I stayed on 50. I had no withdrawals and am doing fine, so far. They all augment eventually and then we try something else. One thing I have not stated here before , I did not realize that I was doing the money spending issue that can go with Rop. I started "helping" out our 4 children by sending them each $1000. We are retired so just happily took it from savings. I felt so good doing this. Even gave my kids help with their bills. It wasn't until I was off Rop. and a few weeks away that I read and then realized that I had been a spending addict. Fortunately it was for my own children and we could afford to do this. However, I am now frugal again (much to my children's dismay, smile). It is strange to look back and realize just how easy it was for my brain to justify this. I now understand gambling and sex issues that can come from using Ropinirole.
Thanks for this, you know what . We're in the same boat. I'm spending cash like there's no tomorrow! I know I can't afford it, don't need it etc but that logical reasoning has disappeared. I have a few side effects from Rop however this is the strongest urge and I've never been like this before in terms of using money. Really don't know what to do as Rop is helping me in so many ways, am on 2 mg and have been for more than a year, no augmentation so far. What did you do?
I switched to Lyrica. The only other thing you can do is tell your significant other or someone very close to you. You can't control this on your own. If needed ask someone to take over your finances for a while. Get rid of your credit card. It is a tough addiction, like all are.
Sorry to hear you had such a crap time. Thankfully my GP warned me about the compulsions & has warned me about 'upping the dose'. I haven't actually started Rop yet (due to start Monday) but currently, despite all the problems surrounding this med, I'm gonna give it a try. It comes to something when you actually wake up in the morning and the RL starts (starting in the morning is definitely a new thing for me, usually kick in late afternoon/early evening).
All i can say its a lifesaver until its NOT. Thats when the hell begins
It really works for some people, but I was one that it just stopped working for; the augmentation got worse and worse, and I needed to keep increasing my dosage in order for it to do anything. When my GP and I decided to stop it, I had the most miserable week of my life...I had RLS every single minute until the drug was out of my system. It also made me feel awful in the mornings, even at a low dosage.
I suspect that my GP prescribed it without really knowing anything else about RLS...it was in 2010, so I don't think meds like gabapentin were on the radar yet. I also second what a PP poster said about never increasing the dose...I agree that probably makes things so much worse in the long run!
My mom, on the other hand, has been taking 5mg daily for probably 10 years, and she's only had good results!
So, I do think when it works, it REALLY works, but some of us have just had negative experiences.
I'm having decent luck with a low dosage of gabapentin; it hasn't taken the RLS away completely, but it's taken away the intensity and the length of the attacks, so I'm not up all night and sleeping much better.
I tried Ropinorole a few years ago when my dosage of Pramipexole went up but it made me ill. Couldn't get off it quick enough. Rely on Pramipexole on a daily basis and, as long as I remember to take it, it does the trick.
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