Hi I wondered if anyone has experienced Pregabalin. I am currently on 5mg of Ropinerol and finally a new doctor to my surgery is taking me seriously and has referred me to a neurologist. Who has decided that I should try the Pregabalin alongside the ropinerol in the hope of coming off it completely. She did say that if it didnt work then she would try Gabapentin with me. I just wondered if anyone had tried it and had any side effects with it? Im currently at the point where I cant carry on the way I am, working double shifts all week so that I dont have to try and go to sleep. Im lucky that Im self employed and work from home so I can work for 2 days straight then take the meds and sleep. I hate taking the ropinerol because it makes me feel awful so thats why im doing this at the moment. I fell asleep stood up a while back and fell down my stairs and broke my shoulder so Im pretty desperate at the moment.
Pregabalin: Hi I wondered if anyone has... - Restless Legs Syn...
Pregabalin
Hi. I'm sorry to hear you're having trouble. I am actually on my way off Lyrica. I suffered from negative psychiatric effects (aggressive and abnormal thoughts) on a 75mg dose. I am currently on 50mg and am feeling my old self again. Despite feeling better already, I plan to get off this med completely.
Its difficult isnt it especially when so many people have different side effects. Im so desperate to get back to normal that I would try any drug they threw at me atm lol. Lots of people have told me to try the cbd oil, but Im financially not in a position to try it at the moment. My lack of money ironically because of my legs. Its so frustrating. Ive got a breakfast bar in my kitchen where I have to use my lap top so I can stand up and still type.
It sure is!! Forunately, my legs have now gotten used to the lower dosage. I gave them plenty of time to since I've been on 50mg for over a month now. It was actually easier than I thought to go down. It's true I went through about 3 weeks of breakthrough symptoms 3-4 times a week, but, since I had been bracing myself for a lot worse, I was pleasantly surprised that it wasn'tworse. I think that might be part of the trick here (for me anyway). Brace for serious impact so that, when the reality is not as bad as you imagined, you are not as pissed.
I plan on continuing my journey down the next time I see my doctor in August.
I wish you better days!🙂
Lyrica almost destroyed my life. I was prescribed it for fibromyalgia. I will never ever try it again.
I'm so sorry to hear that. Are you doing better now?
Albeit a bit better, I'm still having bad moments psychiatric-wise. I'm can't wait to get off this stuff and feel like my old self again.
I really hope your doctor knows how difficult it can be to reduce from 5mg Ropinirole.
Take it very, very slowly. 0.5mg reduction every 3-4 weeks. With each reduction the RLS will worsen, but then should settle. Only reduce again when it has settled.
I withdrew from 4mg of Ropinirole and I now take 25mg OxyContin and 50mg pregabalin.
I was on 150mg of pregabalin but I was only taking it to counteract panic attacks and wakefulness on the OxyContin.
The average dose of pregabalin for RLS is 150mg taken at night but you can increase to 300mg.
Side effects tend to settle after 2-3 months.
I had increased appetite, dizziness & double vision but only for an hour in the morning. The side effects disappeared after 2/3 months for me.
Good luck getting off Ropinirole and I hope it isn’t too difficult for you.
My daughter has taken it without too many side effects so Im hoping im the same, she got drowsiness after she took it, but I dont care as I will be taking it at night and will not be going anywhere once ive taken it. In regards to the Ropinerol I dont have that kind of effect with it, it makes really sick once it kicks in and I have to then lie down and immediately go to sleep as I get drowsy with it, but only once its in my system. I really dont think I will have a problem coming off it, I get no symptoms except for the rls that doesnt go away when I work through the night so am missing a day then, and I dont get any symptoms other than the rls. When I take the ropinerol it may make me feel that sick that I have to lie down immediately, but it works and I only went up to 5mg because of my diabetes and my iron deficiency. This week ive actually started taking 4 because now my iron is up again and my sugars are more under control it has taken the edge of it. I will of course come and let everyone know but she has said to take the ropinerol alongside the other, and if I feel okay with it then come off it but only if I feel I can. So will see what happens first.
I think you and your doctor need to be aware that Ropinirole has serious withdrawal effects. The withdrawal manifests as more severe RLS, constantly. For the 10-14 days after you stop the last dose, you get hardly any sleep and constant RLS everywhere. Ideally you need 2 weeks off work.
If you’ve been on 5mg for over a year the withdrawal can be severe.
Most people can’t get through withdrawal without a strong opioid.
I just want you to be aware that withdrawal from dopamine agonists is tough. The medication leaflets mention it as well. I’m not sure your doctor is aware , as she seems to be suggesting a straight switch from Ropinirole to pregabalin.
Raising your serum ferritin above 100, preferably 300 will help.
Okay im 48 and ive had rls since being at school I was about 13 the earliest I remember my legs starting under the desk. Ive never had a problem coming off Ropinerol, ive stopped it in the past and yes just stopped taking it because of other health conditions and they thought it may clash with the tablets. Ive never had any issues at all just stopping, and like I said I go for two or three days with out taking it because of my job, Im self employed so cannot afford not to work and find it better to keep up and work through the night at my breakfast bar. My legs have not gone any worse just the same. The only thing that ever made things worse was when I was on antidepressents in my late 20's and they pushed it to an intolerable state, that was when I went on the Ropinerol. Then I came off them because of something else that was tried with me and have done so twice but nothing else seems to work. Getting my diabetes in check and my iron count to normal has actually helped and when Im not taking the Ropinerol for the days im doing nights my legs are just the same as they have always been. I understand its different for other people as all medications are, but I am quite sure that I will be able to reduce the tablets as my dosage varies. Like now ive gone from 5mg to 4mg because my sugar is in check and doing well. I have a few nights in the past few weeks only had to take 2mg as I stagger the tablets them making me feel sick and I fell asleep but I was on a healthy diet routine for my diabetes. But it didnt make any difference to how my legs behaved they were just the same. As for taking two weeks off work I would be sat here in the dark and cold im self employed and live from week to week at the moment, hence why I am working for two days solid then sleeping a day so that I can make up my wages by working for two different agencies. Im sorry if I sound harsh but I know about Ropinerol have been on and off it for years and I know how it affects me, and I have come off it in the past and will come off it again if these other meds work. My daughter has had the pregablin and she had no side effects so fingers crossed it runs in the family. If not onwards and upwards will try something else. I do know my blood sugars have a direct effect on my rls so Im looking into that at the moment as well and have ordered a blood sugar testing kit to see what my sugars are when my legs are really bad. Will let you know what happens
It just goes to show we really are all different when it comes to meds.
I hope the pregabalin helps- and I’m sure you won’t have side effects.
Good luck.
After our recent correspondence in my post on bar of soap, I have to urge you to be cautious.
I understand that people differ, but we don't differ that much. Ropinirole like all dopamine agonists if taken for any time produces physiological dependence. It will do this for everybdy who takes it.
If anybody ceases to take something on which they've become physiologically dependent there will be withdrawal effects, whether they're recognised as that or not.
In addition there are warnings that nobody should stop taking a dopamine agonists suddently and this is because of the risk of neuroleptic malignant syndrome, which although rare is potentially fatal.
You say you know ropinirole, which is what I assume you mean by "Ropinerol", but even if that were true, it would still be more sensible to reduce the dose gradually and consistently rather than what you appear to want to do.
Unless of course you are referring to some other medicine called Ropinerol. However, there doesn't appear to be anything with that name.
omg sorry for the spelling mistake. You are not an authority on how I have been taking my tablets for the last many years and that is how I have been taking them. Some times I only have to take 2 mg other nights its the full 5mg it depends on how bad my legs have been. The only times when they have been so bad the 5mg hasnt worked is when my blood sugar has been high but my diabetic tablets have been reviewed and I am on the right dosage now. Like I said before I have always taken the tablets like I said and I am not going to start doing it any different now, why would I take 5mg every night if I dont need to. I have to stagger them because of how sick they make me feel and sometimes the 2mg just does it. While you may suffer from rls you are not an authority on how I suffer from it and how I have taken my medication in the last 20 or so years. Everyone is different
Sorry I seem to have misunderstood, i thought you wanted to wean off the ropinirole. I was just concerned that you do it safely.
Hello,
I was able to reduce from 4mg to 1mg of Ropinirole without a problem. It’s only when I tried to reduce below 1mg that it became more difficult and my RLS flared up. As I understand it, the final decrease from .25mg is the most difficult. But, as I understand it, you’re not coming off Ropinirole. I just thought I’d throw this out there. Good luck.
Maybe when I am on 1mg I will be the same at the moment though I am going through days where I just dont take it as Im working nights and it makes me really sick when I take it. My legs dont seem any worse, just the same, although dont get me wrong they are really bad, but they went this bad after taking an anti depressant and also when my diabetes got bad. I am not coming off the ropinirole for now I am just looking at adding the other in to see if it works and I can bring down the dosage that is making me sick. If I take 1 or 2mg or it there doesnt seem to be the same sickness, but sometimes if I take 2mg on an empty stomach I am sick physically sick. The problem is that we are all different so I will just go with my own instinct and what the neurologist says. She did mention that I may have to wean off it, but as Im already going a day or two without it I could well be okay. Fingers crossed but will take it a day at a time and see what happens.
Very snotty reply
I take it for nerve pain and I’m trying to get off it as it effects my vision and balance and makes me tired all the time my cousin was given it for restless leg and it made her worse and before I was given Gabapentin and my balance was so bad I had to hold onto the furniture to get around in my house be very careful about taking any of these drugs
I dont have any choice but to try them. From what I know they work really well for some and awful for others. I cannot carry on as I am with this so I dont really feel I have a choice but to try it. I have to stand at a table while working because I physically cannot sit down some days so I cant see any way forward except to try whats offered. If it doesnt work for me then I will try something else, but I feel that at least I am on the road to being offered different drugs now, where as before it wasnt being taken seriously. Im actually picking them up today so will be sure to report what happens.
Hi I’ve been through what you are experiencing and I simpethise what you are going through I augmented on Pramipexole and had to slowly wean myself off . It was hell because my neurologist had put me on such a high dose after I got through augmentation I was put on Pregabalin by a new neurologist who thankfully was knowledgable about rls and she put me on Pregabalin and it has worked for me.
I started on 75 mg at bedtime and slowly increased to 275mg and I do get sleep now without severe rls I take the dosage two hours before bedtimes it takes a while before it is effective so patience is required!
The only side effects that I have noticed is weigh gain I always feel hungry and have put on a lot of weight but I tell my it’s because of the lockdown!!
Im getting it today, just phoned the chemist and my prescription is ready this afternoon. She did mention that I may gain weight and if I do I will have to change as Im diabetic and already been suffering with weight gain and really strange cravings since going on the Ropinirole and apparently its well documented that people can have really strange cravings and obsessions with it. So fingers crossed I wont gain weight, but if I do then she will try something else. Its bloomin mad isnt it the complications of these drugs but also how different they are with other people.
I’m on Ropinirole for RLS and high dose of Dihydrocodeine and Tramadol for pain management for severe stenosis throughout my spine. For a number of years I also took Lyrica /Pregabalin but had to stop immediately as I reported suffering from sudden drops in oxygen levels and tightness in my chest. Its been over a year since I was taken off of Pregabalin and haven’t had a repeat episode. I also suffer from Asthma and COPD so it wasn’t worth taking the risk. There is a FDA warning about the risk of lethal contraindications between Lyrica and Opioids.
When getting off the Requip I had to get on an opioid. I was taking 5mg of Requip when i started have sever augmentation. I would get off that Requip ASAP and i defiantly would not increase your dose. I lowered the dose of Requip by .25mg each week until i could get off of it. It was pure HELL i am not going to lie, but i finally got of May 1st. I currently take an opioid and 600mg Horizant. I am starting to feel normal again and getting good sleep at night. I am sorry that you got so high on the Requip because coming off once you augment is total HELL. If you can get an opioid that will help a lot.
I also take a Magnesium powder, lavender essential oil, Iron and Vitamin C. I am being scheduled for a Iron Infusion in the coming weeks since my ferritin level has only increased to 87 from 27 in a year. They like your ferritin levels to be well above 100 and some now say 300 for RLS patients.
I can go for a day without taking it at all, because I work nights and it makes me feels badly sick and I can be sick I cant take it on the days im working nights because i would just be sick and go to bed lol. So if Im working a night like I am today then I will not take my dosage and the next time I take it will be Wednesday night time when Im going to bed as I work a double shift being self employed. My legs dont feel as if they are any worse, so Im really hoping that if the other Pregablin works then I can come off it completely. If it doesnt she said there were others I could try. The thing she did say is that if I start getting the hungry feeling and it makes me eat more that she would try something else because Im diabetic and already over weight. I have cravings that started with the Ropinirole and that is something else that only started when I went onto the higher dosage really. So I dont know why when I dont take it for 48 hours I dont get this augmentation thing people are talking about, I had a week once where I stayed awake for 2 nights because I had not earnt a lot of money and had to get some extra clients in and still no difference in my legs. I mean dont get me wrong they are bad that I cannot sleep and I have set up my breakfast bar so I can work at it stood up because I cant sit down but my legs have not worsened. I do feel high blood sugar is having a big effect because now my sugars are more regulated my legs are not as bad and I am on iron tablets as well. But if I eat or drink something that makes my sugar spike my legs start right away. Im going to do a self assessment thing and test my blood sugars when my legs are bad to see if its right what im thinking. Its difficult because we are all different so Im hoping that the pregablin works for me.
I uses, no side effects. Gabapin is also good
Im hoping that it will be the same for me 
My daughter had it for a while and she had no side effects but she didnt like it because it made her sleepy after she took it.... she was taking it for other things.... I am hoping it will put me to sleep lol, but fingers crossed it wont have any side effects. Thanks for sharing
Good morning. I take Pregabalin at 7pm and the Ropinerole at bedtime. The Pregab has been a life saver. I have been able to actually sit down and watch tv/read a book/ pay bills etc in the evenings. The Ropinerole knocks me off my feet but keeps me from kicking all night.
Hope you find relief and some quality time.
Hi,
What is the dose of Pregab that you take ? Are you into augmentation as well ?
I take Pregab 200mg every evening. I am not augmenting. The Ropinerole makes me extremely sleepy even at the lowest dose. The Pregabalin doesn’t make me sleepy but controls my legs so that I can be a functional adult in the evenings.
Im the same but I also get real bad sickness with ropinirole but it does stop my legs from kicking. Having said that it takes ages to work after I have taken it and sometimes it can be hours which is why I need to get on something else and possibly stop taking it. I know we cant go out much atm with tall this virus thing but when I go somewhere I have to be really careful about the times and if its sitting down with my legs because I cannot take the Ropinirole as it can make me sickly and fall asleep and I cant go on a plane journey thats long because I simply cannot sit for long journeys.
Forgive me if you don’t find what I write applies to you at all. As you previously admonished me, I don’t know you and I’m no authority on you.
However, I thought the following information may be of some help to you.
Ropinirole, a dopamine agonist (DA) works because it stimulates dopamine receptors in the brain. It does this for everybody that takes it.
Taking a DA over a relatively long period of time is known to cause some complications. These are well documented. They are loss of efficacy, augmentation and Impulse Control Disorder, (ICD).
Not everyone gets these complications and not everyone who gets them gets them after the same length of time so there are differences between people. However, the chances of anybody getting the first two are quite high and there’s no predicting who will suffer except that the higher the dose and the longer you take it, the greater the risk.
The signs of loss of efficacy and augmentation are that symptoms get progressively more intense, they can spread to parts of the body, they start occurring earlier in the day and the time between starting to keep still and the symptoms occurring gets shorter. Commonly, people also suffer severe insomnia.
There may be individual variations to some degree but it appears the intention of taking a DA is to prevent symptoms occurring. The usual advice is to take the DA at more or less the same time in the day. i.e. before the symptoms usually occur. When anybody finds that symptoms start occurring before that time, it’s a sign of impending augmentation.
Taking a DA after symptoms starts, often means that the symptoms take hours to subside, or not at all.
The most effective treatment for augmentation is to stop taking the DA.
ICD isn’t as common as augmentation, but it does happen for some people. When it happens there are individual variations in what form it takes and how severe it is. Typical forms are feeling compelled to gamble, buy things, overeat etc. For everybody who has an ICD compulsions will be felt as cravings if the activity isn’t carried out.
The most effective treatment for an ICD is to stop taking the DA.
It is well documented that taking a DA leads to physiological dependence. There may again be individual variations in the degree of this dependence. The higher the dose of the DA and the longer it’s taken for increases the degree of dependence.
Having augmentation, cravings and physiological dependence as a result of taking a DA have implications for withdrawing from the drug.
Since augmentation is caused by taking the DA, then for most people, if not all, the signs of augmentation should disappear.
Anybody who is physiologically dependent on a drug will experience withdrawal effects when reducing and stopping it. There will be individual variations in the intensity of withdrawal effects, when they occur and how long they last. They usually start to occur within 24 to 48 hours of stopping the DA.
It is well documented that the faster the drug is withdrawn the worse the withdrawal effects will be.
As ICD is caused by taking a DA, it seems logical that cravings will reduce as the DA is reduced. There is some variations between people in this in that the ICD for some people continues even after cessation of the DA. The other effect of withdrawal, having an ICD, is that people are more likely to suffer from DAWS (Dopamine Agonist Withdrawal Symptom) which can result in severe mental health problems.
Physiologically active DAs such as ropinirole have the same physiological action on everybody that takes them. Everybody who takes then for some time will develop physiological dependency and consequently will have withdrawal effects.
There are differences between people but these are largely a matter of probability and degree.
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