why do a lot of members want yo come off Ropinirole? To me its my lifeline
ropinirole: why do a lot of members... - Restless Legs Syn...
ropinirole
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Because the vast majority have or will experience a severe worsening of RLS on Dopamine Agonists. When that happens, life becomes unbearable and the withdrawal can be horrific.
You are on 1mg and hopefully, as yet, have not experienced a worsening of your RLS. It creeps up on people, starts to happen earlier in the evening and people then increase the dose which makes it even worse.
If 1mg stops working, don't increase the dose.
Read all the articles on Augmentation and you'll see many people are really suffering
It's why these drugs are no longer first line treatment
i have increased my dose over the years to my current level. Incid3ntally, when I was diagnosed my doctor told me it would get worse with age, and it has, but Ropinirole helps me. Thank you for all your replies. I did wonder why so many people were deserting ropinirole. Could this be the reason why the alternative the doctor gave me didn.’t work?
That depends. Did you completely stop Ropinirole before trying the other med? Also, gabapentin and pregabalin take 3 weeks to be effective and don't help if severe RLS is caused by Ropinirole
RLS can worsen with age but more commonly, the RLS worsens because Ropinirole over stimulates D1 opioid receptors and they start firing up, driving augmentation
If 1mg Ropinirole is completely covering your RLS and you can sit through cinema or car journeys with no RLS, that means it's still working.
It is a very good medication for RLS.
However, like the other DAs it comes with a sting in the tail. That's called augmentation - you can look it up - but it means the med don't work no more.
You could get 10 years relief with it , or 10 weeks. But it will turn against you , with a vengeance, at some time.
The longer you are on it , the harder it is to get off.
Thats why people here are so against it.
It comes from many deeply felt personal experiences.
Good luck, and you're welcome!😝
Since you have been taking it for 40 years, you are one of the lucky ones. It is unlikely after so long on it you will suffer from augmentation. Enjoy it.
As Joolsg and Madlegs1 have written, most people find that they have to take more and more Ropinirole over time and it eventually makes their RLS worse.
But if you've been taking it for 40 years and haven't kept having to take more it sounds as though you're not suffering augmentation and may be lucky enough not do so. As Sue J writes you might as well stick with it now - if you can get to source it.
I note that you're struggling to source Ropinirole in Spain but that your son has managed to get some for you from the UK. Let's hope that source doesn't dry up. If it does, I'm afraid you'll have to follow the advice given by Sue and Joolsg in replies to your first post.
EDIT: I see that you've now told Joolsg that you have increased your dose. Follow her advice.
its my lifeline as well but sometimes difficult to get from the chemist. Am on 9mg a day and seems to work well although my rl can come anytime not just evening and affects my arms and tabs do make me fall asleep. Doc tried to change medication to gabapentin but i had to stop ropinirole and start on low dose of gabapentin but was a nightmare as had no sleep for two days and nights so back on ropinirole
If you'vbeeen on Ropinirole for so long then the general advice is to reduce it very slowly. It's also possible to have a crossover period where you are ramping down the Ropinirole and ramping up the gabapentin. I've the same with the different medicationsthat I take.
That my friend is an EXTREMELY high dose! The maximum dose now recommended is just 4mg! You cannot just come off Rop - a very structured withdrawal plan is required - taking a year or more. It sure seems like you are augmenting on that high a dose. Augmentation is so perplexing to many - how can the drug that formerly controlled my condition, now make it so, so much worse.
Read the latest information from the Mayo Clinic. mayoclinicproceedings.org/a...
Reena,
If you're on 9mg Ropinirole, the doctor prescribing such a high dose is clearly very ignorant about RLS.
You have it in your arms.
The doctor was ABSOLUTELY right to try to get you to switch to gabapentin but the switch has to be done very slowly
Reduce by 0.25mg every 2 weeks. With each reduction,RLS will flare up so ask for low dose codeine or tramadol to help settle flare up.
Withdrawal is hellish and your RLS will get worse but it's the only way to stop your RLS becoming unbearable
Start gabapentin about 4 weeks before the last dose of Ropinirole and read everything you can on here about Augmentation and withdrawal
Nearly every post is about Ropinirole and Pramipexole causing more severe RLS
Most of us have withdrawn from Ropinirole and are in a much better place.
Just please read and research. Augmentation is hell.
all my doctor said was stop the ropiniroke and start with 100mg gabapentin but was hell. She said it the only way and could take upto 3 weeks for gabapentin to kick in. I endured 2 days without ropinirole and taking gabapentin but was so tired because of the rls. I had hip replacement 4 weeks earlier so was getting pain from that and couldnt cope so just went back on ropinirole. Doctor didnt seem to haveany knowledge of rls. I had never heard of augmentation. At the moment am still taking 6mg at night and the other 3mg as and when during day and night!
This is exactly why it's essential GPs in the UK are taught the basics of RLS. Their total lack of knowledge causes overprescription of Ropinirole and suffering for patients
To switch you off Ropinirole to gabapentin without a VERY long withdrawal schedule is dangerous and negligent
I started a campaign last year to get RLS taught to doctors in the UK but the RCGPs said it was unnecessary and GPs knew enough and could research.
Your case shows what utter nonsense that is. GPs know nothing and your GP has overprescribed Ropinirole and has switched you cold turkey.
I strongly advise you to spend a few hours reading all the posts on here about Pramipexole and Ropinirole. You will see that nearly everyone is suffering severe, worsening RLS, like you.
Start reducing Ropinirole now by 0.25mg every 2 weeks. It will take at least 40 weeks to reduce to zero. Start gabapentin at least 4 weeks before last dose as it takes 3 weeks to be fully effective for RLS. Start with 100mg then increase by 100mg every 2 days up to 900mg. Then increase up to 1200mg after you've stopped Ropinirole. If 1200mg isn't sufficient, you can increase to 2400mg. Take in 600mg doses 2 hours apart. Alternatively, ask GP for pregabalin which is absorbed more easily. Start that at 75mg and increase to 150mg.
With each dose drop of Ropinirole, the RLS will flare up. Stay strong and ask GP for tramadol or codeine to cover the symptoms. They should settle after a few days.
Ask GP for full panel fasting blood tests to find out your serum ferritin and serum iron, transferrin and TBIC.
Ask for the numbers. Ferritin needs to be above 100 for RLS, preferably 200. Iron needs to be above 60.
Until you take the steps to reduce Ropinirole now, you will continue to have severe, intense RLS and it will get worse.
If you are willing to send me details by private message, I could use your story as an example of poor treatment caused by lack of teaching and training. I'm now collecting evidence while I wait for a reply from the president of the Royal College of GPs.
Many of us have been in your position, joined this forum, learnt about augmentation and managed to get off Ropinirole. We all realise that we have to do the research ourselves and the UK is about 10 years behind best practice. The Mayo algorithm contains the most up to date treatment protocol by the world's top RLS experts.
I was on Ropinirole for years. I had RLS all the time and in my arms, back and face.
I now have zero RLS and sleep 8 hour's every night. With the correct medication and treatment, Dr. Buchfuhrer, a top expert, believes 97% of patients can be RLS free. He sees thousands of RLS patients every year. A UK GP will probably only ever see one or two patients a year
Sorry for the long speech, but I get very angry when I see the appalling treatment of patients caused by total lack of teaching of RLS in the UK.
problem is, I have lived in Spain for the last 14 years, so I cannot blame any GPs in the UK
Sorry,that reply was to Reena on 9mg of Ropinirole
Hi. I just read your reply above. My Ferritin level is 14, which I only found out yesterday. I have been a Guinea pig for different medication's which are horrible and 2 Dr.s have tried to give me iron but the Dr. I spoke to yesterday said that I don't need iron because I'm not anaemic. I have read that RLS can be caused by low Ferritin levels but my Dr. just wants to pump me full of revolting chemicals! I have multiple health problems but RLS is making me very depressed and where, I have been a fighter, I am finding that difficult now.Good luck with your ' battle' with the medic's. I have found the younger Dr.s more open to talking about iron and Ferritin levels! My older Dr. doesn't believe that a Ferritin level of 14 is a problem with RLS and I'm not a medical person so I can't argue with him !
Take care and all the best,
Danni
0Danni,You need an iron infusion.
Your RLS could be completely resolved.
Injectafer, the newer formulation, is safe.
Where are you?
If here in.UK, you can ask to see Dr Jose Thomas at Gwent Sleep Clinic or Prof. Matthew Walker at Queen Sq, London.
Both would arrange iron infusions as first line treatment. Dr Thomas won't give meds unless iron infusions fail.
However, if you're currently on dopamine agonists, you need to follow the frequent advice on here and get off them slowly.
Iron infusions will be safer and more effective for you, I think, as I've just read your sad bio. You have had appalling treatment so far from your doctors. You should now demand a half hour appointment to discuss all your conditions and meds.
Have a look at RLS-UK website and the meds that worsen RLS. (Under treatments). All anti depressants, sedating anti histamines, and many PPI stomach meds will trigger or worsen RLS. You will need a review to see which ones can be safely switchec and replaced with safe options.
Hopefully you are not on dopaminergic drugs like Ropinirole, Pramipexole or the Neupro Patch.
Hi Joel's. Thank you so much. Your message actually made me teary because as I said to Sue, I have felt so ill and so alone and the Dr.s don't really understand what we are all going through and the 1 I spoke to yesterday seemed more concerned about money! I have a 12 mcg Fentanyl patch for the pain from the fracture's and stomach problems and also take Oramorph. Do they affect RLS ? I take Lansoprazole twice a day because the hernia is so big that the acid reflux is bad and then I am on 100 mg Levothyroxine for Underactive thyroid. What is the procedure for contacting the medical professionals that you have suggested? I wish that I could change my Surgery but we can't because so many people have moved here that the hospital and our G.P.'s can't cope and are finding it difficult to employ new medic's. I live in Scotland. I thought that having lung cancer and a Lobectomy was bad enough but if the hospital hadn't left me for 15 month's with the tumour on an Xray but didn't tell anybody then I might not be this bad. In fact , I wouldn't because I walked dog's, looked after parent's and friend's, painted and tutored ++ and now I try to keep going but end up in so much pain because the Dr.s haven't sorted pain meds since taking me off Dipipanone and Cyclizine and putting me through withdrawal for 9 weeks with no programme in place!
My leg's are going again so I will close for now but I cannot thank you enough . Take care and I wish you all the best.
Danni
The fentanyl patch and oramorph should stop all RLS. Opioids are very effective. If you reduce or stop opioids, then RLS can be a symptom of opioid withdrawal. I am therefore puzzled as to why you still have RLS if you're on fentanyl and oramorph.
The lansoprazole does make RLS worse for many people, but it's clear you have to take it for your hernia /acid reflux. Safe alternatives would be Symprove probiotics and gaviscon, but you would have to discuss in detail with your gastro enterologist.
As you're in Scotland, it may be problematic to arrange appointments on the NHS with consultants in England ( Prof. Walker) or Wales ( Dr Thomas). However, going privately may be easier.
google.com/search?gs_ssp=eJ...
Thanks Joolsg. Stupid Predictive Text got your name wrong before! I didn't notice...sorry! I was on Opioid Dipipanone and Cyclizine 3 times a day for6 year's because of the undiagnosed cancer. The Dr.s didn't put a programme in place when they stopped those pill's and not long after the RLS started despite the Fentanyl and Oramorph. I am on the lowest dose patch and I take 2 ml Oramorph at lunch and 3 ml in the evening. The Dipipanone being withdrawn abruptly put me into 9 weeks withdrawal which was horrendous! With my Ferritin level being 14 would that contribute to the RLS despite the Fentanyl and Oramorph?
Definitely.The withdrawal from the dipipanone would cause severe RLS symptoms.
If you didn't have RLS before the withdrawal, it should normally settle within 6 weeks, especially if you're on low dose fentanyl and oramorph.
Raising serum ferritin above 100, preferably 200, resolves the majority of RLS.
In your case, because of your stomach issues, an infusion is the best method of raising levels.
If you speak to Prof. Walker as a private patient, he can arrange an iron infusion at a nearby hospital.
In.fact, if you write directly to the haematology dept at the nearest large hospital, they may agree to see you. It's what I did. I sent them a research paper to show how effective infusions are and they agreed to see me. The GP still had to arrange a referral letter to comply with NHS procedures.
sciencedirect.com/science/a...
Use this paper to persuade your local hospital haematologist to do an iron infusion.
To amplify what Joolsg said and to add more details: 9 mg is 2 and a quarter times the maximum amount and you are augmenting. As she said reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. I would suggest waiting to increase the gabapentin until you have been off the ropinirole for several weeks, but you could also go ahead as Joolsg advised, since the normal starting dose is 300 mg. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you need more than 1800 mg you are better off to switch to pregabalin which doesn't need to be taken in divided doses. When you see your doctor ask for a full iron panel as Joolsg said. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice.
Hi Sue, I am currently taking 4mg of Ropinirole and 900mg of Gabapentin. Im in my first week of reducing the dose of Ropinirole by 0.25mg, should i keep on taking the Gabapentin or ease off those as well.
There is no reason to reduce the gabapentin. Take 600 mg 1 to 2 hours before bedtime and then 300 mg 4 hours before bedtime as it is not well absorbed above 600 mg. Did you ever have your ferritin checked?
Thanks for the reply Sue , had my ferritin checked last week and it was just over 200 which my GPS said was unusually high.
That's good - although not unusually high. Mine was over 500 and it is often recommended by some to be over 200 and even 300.
Hello, I am relatively new to learning about what meds work and which ones to avoid but have been on zapain for many years. However my rl are worsening and I took my first ropinirole tablet last night having been prescribed by my GP (I am in the UK). Given what I have just read on here should I stop this immediately and go back to my GP and discuss gabapentin? I have not had my bloods taken for a while but she advised in 2018 I was 28?? So she has prescribed me ferrous fumarate 210mg. Any advice would be gratefully received as my rl have become unbearable to the point I now struggle to sit down in the day, evenings and are unbearable and of course lack of sleep. Thank you.
Yes stop the ropinirole. Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. Up to 70% of patients will suffer from augmentation which believe me you don't want. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. Also you sure have your ferritin checked. If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. Ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It won't be fully effective until around 3 weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin) daily." If you take magnesium take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Thank you so much for all the information it is really helpful. I contacted my GP and they have changed my prescription to gabapentin. Will be starting on Monday. Thank you.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thank you so much for all the information it is really helpful.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist and especially at that high a dose at Https://mayoclinicproceedings.org/a...
Hello Reenag06. Please please please take notice of the reply from Joolsg and Sue they know what they are talking about. I’m currently in the position of withdrawing from 6mg Ropinirole a day and have been doing since 23 October 2022 and am down to 2.5mg a day. It’s not easy and do go through periods of wanting to increase my dosage again but so far have not done so. Nothing in life that’s worth doing is easy and I would not be telling you the truth if I said that coming of Ropinirole was easy, it’s not, it’s the hardest thing I’ve ever had to do but the thought of the prize at the end is what I focus on. I couldn’t do it without the support and encouragement of members of this forum and that of RLS-UK who initiated my withdrawal program so please stay strong, your not alone and unfortunately many thousands of people are facing what you are experiencing, so the sooner you start the better. Take care and look to the pot of gold at the end of the rainbow 🌈
Yes, as Joosg says ... the augmentation (the nasty thing where you suddenly find that the dosage you are taking is no longer enough, and at the same time your RLS is getting worse) creeps up on people, starts to happen earlier in the evening or even during the day, and then is worse also at night, and people then increase the dose which makes it even worse. Really really important to watch out for this and understand what is happening if it does hit you.
when I was diagnosed with RLS my doctor said there was good news and bad news … the good news is there’s a treatment called Ropinirole that will help. The bad news is, it will get worse with age. So having bern diagnosed around 30 years of age and I am now approaching 76, how the hell am I to know whether its has got worse because of augmentation or age? I have tried several different types of medication but always come back to trusted Ropinirole (albeit by another name!) and I am going to stick with it. I take 2mg at bedtime. I just wanted to say this as ropinirole may not be the demon med thst is making your RLS worse.
Hi there, how long have you been on Ropinirole,? For the first year, I was fine, started on 1mg, after second year I was taking 3mg and reached Augmentation. My legs were going crazy, also started to get in my arms, not at the same time luckily, but my body still needed the Ropinirole. With the help of Pregabalin, it's taken me practically a year to drop from 3mg to just a quarter a day. If I forget that quarter, my legs go crazy, I can forget about going to bed. Im having so much trouble getting off that quarter but the Neurologist is happy that I've come down from 3mg. My RLS is still bad, both in arms and legs, never know when it's going to start or stop, but not half as bad as taking that 3mg. I wish I had never been given Ropinirole. I was first introduced to it by the Neurologist about 10 years ago. It's been a tough journey getting down. I hope one day to be able to stop taking the quarter but I can't see that happening.too soon.I've tried on numerous occasions and it's as though my body is screaming out, give me that quarter now! . The Pregabalin has helped alot, I doubt I would have ever been able to come down from 3mg. I first started on Pragabalin about 6 years ago in desperation, I had already try Gabapentin and various other meds. I had tried everything. After two weeks, I came off, didn't like the side effects. 6 years on I started it again, Neurologist said, I hadn't given It enough time for my body to get used to it. I'm so glad I persevered this time. It has really helped me. I take 100mg in the morning and 150mg in the evening 1 hour before I try to go to bed. I take with my quarter of a mg Ropinirole. It's taken since November last year but gradually I've been able to come down in quarter's. This is my story, as you did ask why some people were trying to come off. I believe because one medication suits somebody, that dosent mean its going to suit everybody. We are all different.Ropinirole might be great for you, I really hope it continues to do so. Unfortunately for me, it's been a nightmare of restless evenings and sleepless nights. I wish you luck. X
I
i have been taking ropinirole for 40+ years. I started on 1mg and now take 2mg. That has been the case for about 10 years. My only problem is lack of availability in Spain.
That last dose is hell to get off. I used tramadol and cannabis and kratom. Iook 2 week's off to get through it.
If you can bite the bullet, do so! Once off the last dose, you'll have a horrible 2 week's withdrawal but then it settles and life becomes so much better.
I now have zero RLS night or day on low dose Buprenorphine.
Ask your doctor for temporarily a low dose opioid to help you come off the ropinirole. If needed print out the appropriate section of the May Clinic Updated Algorithm on RLS to show him/her. I assume the quarter pill is of the 1 mg pill. Try shaving off a little of it each day and wait for 2 weeks and then shave off more.
Thank you Sue, yes my quarter pill that I refer to is 0.25mg. Just stopping the quarter was not a good idea, the withdrawal wasn't nice so i continued to take. There isn't much left of the pill to shave, as i have small 1mg tabs and have to cut into 4 which isn't easy. I will try shaving more off every 2 weeks untill I'm off completely. I do know I'm going to go through awful withdrawal. I'll see how it goes. I don't expect my restless legs/arms will go away completely, as I suffered with it long before going on Ropinirole. I do know that once I'm off, I won't have to suffer Augmentation with the Pregabalin, as Pregabalin is not a Dopamine Agonist. My restless legs though is not half as bad as what it was when I was on 3mg. I'll never go there again. I'm hoping it will be even better once off Ropinirole for good. Thank you for your advice.
I take 300mg Gabapentin and 0.125mg Ropinirole every night just as I am going to bed. On the odd occasion that I wake up with RLS in the night, I take another 0.125mg Ropinirole.
I was on solely Ropinirole for about 17 years - I still believe that it is the only drug that is truly effective .......
With the Gabapentin, I was able to reduce the amount of Ropinirole that I was taking (which WAS causing augmentation without a doubt), but it is not something that I will do without, as even the small dosage that I take still works as a "miracle drug".
Hi there,So pleased that you are able to control your RLS taking such a small dosage of Ropinirole together with Gabapentin.
What works for one, may not necessarily work the same for another sufferer of RLS. The main thing is, Ropinirole works for you, and I hope, it continues to do so.
May I also asked you learned people what the equivalent amount of Pregabalin to Ropinirole? Is it like for like? If I qm to replace the latter with the former I need to know this and its no use asking any doctor here! Thank you
Hello there,In answer to your question,
I can't say it's like for like as I was on initially, 3mg of Ropinirole and now I'm on 250mg Pregabalin per day.
It was the Neurologist that prescribed Pregabalin to help me off Ropinirole. He wrote to my GP and suggested I start on a low dose of 50mg of Pregabalin am and pm and build up over a couple of weeks in amounts of 50mg, untill I reached the dose I'm on now. 100mg in the morning and 150mg before bed. I can go higher if I need too. I think the max dose is around 600mg per day for RLS. I do think Pregabalin has helped me alot in coming down from 3mg of Ropinirole per day to 0.25mg. I couldn't of done so without it.
There are side effects when first starting, on Pregabalin, a little dizziness and a feeling of being spaced out. The first time I was prescribed Pregabalin, I was put on a higher dose of 100mg to start, I didn't like the side effects so I took myself off it. I was told by the Neurologist that I should of given it more time for my body to adjust and started me on the lower dose of 50mg. I had less side effects and got used to it, in order to build up to a higher dose more slowly. I may have to go higher, especially when I finally manage to get off Ropinirole completely. I'd rather do that than continue on Ropinirole. Pregabalin is not a Dopamine Agonist.
I do hope this answers your question and wish you well.
Hello again,Can I just mention that I've had Restless Legs and arms now for about 10 years.
I was prescribed Citalapram, an antidepressant because I lost my son. Within days it had kicked off RLS. There was not a night that I did not have it, I spent most nights sitting in a hot bath for relief.
I stupidly went cold turkey stopping the Citalapram suddenly thinking the RLS would just go away. Unfortunately, it didn't go away and has been with me now for 10 years.
The doctor told me that I could not take the new antidepressants, SSRIs, and put me on Nortryptiline instead, which didn't help with my depression, as much as the Citalapram had.
Going on Ropinirole 1mg for the first time was great, my RLS stopped, I was able at last to get a good night's sleep.
It did not last and I had to keep upping my dose until I eventually got stuck on 3mg as the doctor would not let me go any higher because of other medications that I was on
I soon reached Augmentation, my RLS went through the roof.
I then spent a few years just going down 1mg to ease it and then going back up the 1mg to ease it. Most evenings I had RLS, unable to relax and read a book or watch a film without having to walk around or sit in the bath. Some nights I would not go to bed, I would just stay up untill I fell asleep on the setee. Next day was like walking around in a fog.
I tried so hard to come off Ropinirole, one night got so fed up, I just stopped taking it. The withdrawal was shocking. I went straight back on the 3mg.
If it wasn't for Pregabalin, I would not t of reached this point, where I just have to get off the last quarter tablet. I know I will always suffer with RLS but its not as bad as it was on 3mg of Ropinirole. I had already tried other medications, going back on Pregabalin was the only option for me.
What works for one person dose not necessarily work for everybody.
I do hope you are able to find the right medication that works for you
Restless Leg Syndrome or Restless Limb Syndrome, as I get it also in my arms, really is a curse. I dread the day when I'm alot older and maybe bed bound and I'm not able to get up and walk around to ease my legs. Let's hope that one day there will be a cure for RLS.
Safe anti depressants for RLS are Wellbutrin or trazodone. They might possibly be more effective for you than Nortryptiline. Discuss this with your doctor. They both not only work for depression but for some have helped their RLS. Pregabalin can work quite well and the maximum dose is 450 mg. so hopefully when you are older and bed bound, which you may never be, you won't have to worry about not being able to walk around. If you are taking magnesium take it 3 hours before you take the pregabalin. On getting off the ropinirole as I mentioned before, you might ask your doctor for a low dose opioid temporarily to help you. Have you had your ferritin tested? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice. Also, check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Thank you Sue, sorry for late reply, I have a GP appointment coming up so definitely will be having a word with her about my meds.I have had my irons checked by the Neurologist, and have been told everything fine.
Thank you so much for your advice, it's very much appreciated, I have started shaving down my last quarter of 1 mg Ropinirole, so far so good. 
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