I have had rls for almost 25 years, began during my second pregnancy. I have been switching from Ropinirole and Pramipexole for the majority of this time.
I am now suffer with augmentation, there is never the right time to wean yourself off, but know I just have to do it before my symptoms get any worse. I have for the last two days reduced to 1.25mg Ropinirole and have had roughly 3 hours sleep per night. As we all know, it is so difficult to function when we are so tired, the more tired I am the worse the condition is, so it’s a vicious circle. I have had my iron levels checked and they were very low, this has now been resolved.
My question is really about taking other meds to help with the withdrawal. I have been on the mayo website and opioids seem to be the best option and there doesn’t seem to be any concern regarding becoming dependent., but I am very worried to start assuming this is an option, I’m in the UK and haven’t yet discussed with my doctor.
I read here that someone was using Gabapentin to help with the withdrawal which seemed to be helping. I am concerned that even if this was a viable option there could be side effects that are worse than the condition itself, a family member has lost their hair because of this drug. Just really don’t know what to do for the best. The thought of working all day feels me with horror on just 3 hours sleep and really don’t know how I am going to manage this withdrawal from Ropinirole.
so sorry for the long ranting post, but my life is and has been destroyed by this awful disease and I wonder how much more I can take.
Any advice would be greatly received as I am just overwhelmed with so much information.
Hope you all have a good day! Thanks again
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21years
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First off how much are you reducing and how often. The normal advice is .25 mg every 2 weeks but some people need to go more slowly. You can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it.Then reduce by that amount every 2 weeks. Let the increased symptoms settle before you reduce further. Yes opioids will help. Buprenorphine is the best. The problem is your doctor may not prescribe them. Other possibilities are cannabis and kratom. Joolsg can tell you how to get that. Kratom is illegal but you can buy it from kraatje.eu/contents/en-us/d... and they are discreet and also from kratom.co.uk You would want red vein.
But also gabapentin or pregabalin can help. I am sorry about your relative but that is a very rare side effect and my understanding is if that happens and when one stops taking gabapentin that the hair will grow back. I have not heard of that happening on this forum or another one I was on. Do not worry about the side effects of gabapentin or 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. And if you can't live with them if you slowly withdraw from it you will have no withdrawal symptoms. Many people, myself included find gabapentin to be a life saver and completely control their symptoms.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It takes 3 weeks to be fully effective and it won't be fully effective until you are off ropinirole for several weeks. After the 3 weeks 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 split the doses with pregabalin). However to help with the withdrawal from ropinirole stop at 900 mg gabapentin (150 mg pregabalin) until the symptoms from your withdrawal settle.
Thank you for your detailed answer. I have reduced by only .25mg , I think I may see if settles but if not after a couple of weeks I will try reducing by a smaller amount.
I am very worried about taking opioids but will definitely look into the option of gabapentin.
My advice came from the Mayo Clinic Updated Algorithm on RLS which is considered the bible for RLS. Obviously 21years will discuss it with her doctor as she can't be prescribed it otherwise.
You gave specific advice that unless you are a licensed medical doctor with extensive experience treating RLS you should refrain from saying things like: "... opioids will help" or that "Buprenorphine is the best" or worse yet telling folks what dose to take and at what time of the day etc. And while your advice is most likely intended to help a hurting soul, that's the type of advice only a medical professional should be suggesting.
Support is great. Medical advice from non-medical professionals is dangerous, and that is what I'm calling out because that is exactly what you did with the words you chose.
I have seen them. I have it printed out and on my computer. However, having medical info in my possession doesn't qualify posters to give specific medical advice (like what you gave in terms of dosing, time of day for taking meds etc.). I personally see two of the top doctors in this field (in the US) for my severe RLS and their request is for the medical advice to be qualified by a medical professional.
Judging from your responses that have not qualified you as an MD I'll end this conversation by saying to you, and to others that do it (you are certainly not alone),- stop it. Please stop it.
This only just popped up in my News Feed, so apologies for the late response.
If all doctors were both up-to-date and knowledgeable about everything there would be no need for this forum or all the others on HU on all the various health conditions.
But unfortunately this is not so, and in the case of RLS there is a huge amount of ignorance and plain bad advice and treatment emanating from large parts of the medical profession. For example here in the UK - where 21years is - RLS is not taught during doctor's training, official guidance on the subject is years out of date, most doctors still prescribe DAs for RLS, and many refuse to take account of e.g. the Mayo Algorithm...
Yes, there are experts - particularly in the US - and you are fortunate that you apparently have access to two, including Mark Buchfuhrer. And it's great that he introduced you to buprenorphine (Belbuca) which you've mentioned a number of times. But in some areas of the UK buprenorphine is 'red listed' and cannot be prescribed by doctors, iron infusions aren't available etc etc.
So advice given here by SueJohnson and others is based on experience, wide reading, the most recent research etc. And in many cases it's the only way that forum members will get this information, which they can then use to try to educate their doctors.
As Kaarina has linked "information posted.... can support, but will not replace the relationship between you and your doctor or any other healthcare professionals. Information from this site may inform your discussions as well as the exploration of treatment options with your healthcare professionals. You should always consult a healthcare professional if considering changing your medication or treatment or in case of an emergency."
The majority of users on here (from around the world) have no access to expert advice, and this forum is the only place that gives them the tools to discuss with and to seek better treatment from their doctors for a condition that they find unbearable.
Absolutely, I have spoken to my doctor regarding my medication and the augmentation that has occurred. I could tell she was clueless and just agreed with me about reducing my medication. I clearly knew more about the condition than she did and this is down to the helpful advice and knowledge from those on this site.
I am always grateful for the time people take in helping others but understand that we should be responsible for our own decisions by further investigating the subject.
Meanwhile 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.
There are 2 options for withdrawal from Ropinirole. Reduce slowly and take a replacement drug before you stop completely OR reduce over 3 weeks and have a 2 week drug free period to ascertain your base level of RLS. The latter is very brutal and very difficult. Most people cannot manage it and opt for a slower withdrawal and use opioids or gabapentin during the withdrawal. Worrying about Opioids is very common. But at a low dose, addiction and tolerance do not happen very often. There will always be exceptions. There is an opioid study by Dr John Winkelman at Massachussetts General hospital. It shows that the patients in the study are using a low dose for years and have not increased the dose. It can help settle your concerns..
However, the drugs you have been taking since pregnancy (Ropinirole and Pramipexole) are very scary drugs and cause dependence, as you are discovering. If you withdraw from Pramipexole and Ropinirole, you experience severe withdrawal symptoms.
I was very worried about opioids. The thought of taking them to get through withdrawal terrified me. I did use tramadol to withdraw from Ropinirole and it helped a little, but I still had a very difficult time.
Gabapentin and pregabalin can cause hair loss. When I first used Gabapentin, I lost about a third of my hair. I then switched to pregabalin which had the same side effects. But, I increased my iron and B12 and folic acid and added biotin. My hair grew back after about 6 months.
An alternative to gabapentin and pregabalin is opioids. Many members on this site are taking low dose opioids. However, many GPs refuse to prescribe them so you may need to get a referral to a sleep clinic.
Back to your withdrawal. It is difficult and it can be hellish. If you're still working, arrange 2 to 3 weeks of holiday for when you reach the last 0.25 mg of Ropinirole. The 2 weeks after you drop the last dose are the worst.
Most people will experience little or no sleep for 4 or 5 days. Then the RLS reduces in severity. Do NOT give up at this stage. The RLS does start to lessen with each day.
If you have started Gabapentin or pregabalin 4 weeks before your last dose of Ropinirole, it may lessen the withdrawal, but it won't be fully effective until 3 weeks after that last dose of Ropinirole.
I found that cannabis was the most helpful drug during withdrawal. However, it's only available from private clinics and it takes around a month to get delivery after initial consultation.
But do stick with the withdrawal. After years on Ropinirole and Pramipexole your dopamine receptors will be very over stimulated, driving a worsening of RLS. Once you're off them, you realise how bad these drugs really are.
Read everything you can about RLS and dopamine agonists and augmentation. Read the RLS UK website fully. Read the Mayo Algorithm. Have a look at posts about Pramipexole. You will see that augmentation is everywhere.
Talk to your HR department at work and explain that you are on drugs for a common neurological disease, but the drugs have caused the disease to worsen and you have to go through withdrawal. It can be more difficult than heroin withdrawal and you will need understanding to help you through. Ask your GP to read the links I've attached so they can write a sick note for when the withdrawal becomes brutal. They fail to understand how horrendous it is. This article by Dr Ondo may help your GP understand.
Thank you so much for the information you have given. I have no doubt about augmentation as I am suffering worse symptoms than ever before and I know this must be done. Three years ago I noticed that Pramipexole had stopped working and I was told to stop taking the medication and to swap with Ropinirole. I suffered terribly as of course the replacement drugs hadn’t started to work. I had to take 2 weeks off work. I didn’t know about augmentation then sadly, so now I have to go through the same thing again.
As I have been through this before do you think if I stopped taking Ropinirole completely the symptoms would be the same. I feel that if they were I could try and go cold turkey again as I know I have managed to get through it before. Is there any evidence that people are able to manage without drugs once they have withdrawn. The reason I ask is because my iron levels were so low at 12 aug and are now 87, I know they should be at least 100 so it may be easier this time anyway.
I do know people who can be med free. That's because iron treatment should have been first line treatment for all RLS patients. It is now among experts.Raising serum ferritin above 100, preferably 200 and serum iron above 60 can help the majority of cases. Iron infusions can raise levels faster and I know quite a few people whose RLS has disappeared after iron infusions.
You should NEVER have been switched from Pramipexole to Ropinirole. Augmentation will always happen again. It's a matter of when, not if.
You could drop the 1mg if you feel strong enough. But it won't be any easier. It will still cause intense, non stop RLS and you'll get little sleep. If you could persuade your GP to arrange an iron infusion, that would probably help as 60% show dramatic improvement.
You could then see if you could be med free.
Do consider cannabis, as it helps withdrawal and sleep and you can easily stop taking it once through withdrawal.
I will check my iron levels again with the doctor as they were only tested a couple of months ago, based on your figures it may still be too low.
I feel that I should check with the doctor before I completely stop, but then again, what do they know, if it wasn’t for the doctor I and many others wouldn’t be where we are today anyway.
I do feel strong and utterly determined to get off these drugs, I have had it with them and all the problems they have caused me and cannabis would definitely be a massive help. Unfortunately here in the UK it is illegal but for a few tiny medical exceptions and I can guarantee rls would not be on the list.
Thanks Joolsg for taking the time to help me, it is very much appreciated!
I guarantee you'll get cannabis here in the UK for RLS. I spoke to my cannabis doctor in London recently and he said he prescribes certain strains for RLS.Try the Lyphe Clinic.
I continue to be appalled by the refusal of the RCGPs to teach RLS.
Some sleep clinics here in the UK have doctors who have self taught RLS as they realise what is happening. Try to find a sleep clinic near you. You will know if they are up to date if you ask about dopamine agonists. If they still prescribe them, they're not up to date.
Iron therapy and iron infusions are now first line treatment for RLS.
Check your blood results and get the actual numbers. For RLS they need to be much higher than 'normal'.
That is good to know. I am going to reduce my medication by .25mg but instead of every two weeks, I am going to try every one week. As I am on such a low dose compared to others I’m hoping I will be able to tolerate it.
I will get my blood result numbers and go from there. If I find I am still having unmanageable RLS symptoms I will find a sleep clinic near me.
Feel very positive and in control of it today. Will feel so happy to have finally banished this dreadful medication. I’m under no illusions that it will be easy or that I will be RLS free but I finally feel I am getting somewhere.
Thank you to Sue and yourself for taking the time to help a complete stranger.
Like you, I knew nothing about RLS or augmentation until I joined this forum 7 years ago. The knowledgeable people helped me off Ropinirole and through withdrawal.We all want to help others get off these dreadful meds.
Hopefully you will manage without meds, but if not, there are other treatments available. We all respond differently to them, so it's a case of trial and error.
I’m sorry you’re having to go through this painful tapering, I tapered off 3 mg per day ropinirol back in February this year. Working withJohns Hopkins they do a .5mg reduction 5 days or so and then require you to be off all drugs for 12 to 14 days before starting something new.
While that drug holiday was really difficult my symptoms reduced by more than half and interestingly I started sleeping 3 to 4 maybe five hours a night toward the end of that period.
They then started me on 15 mg of oxycodone which is a very low-dose and it’s working really well. There’s numerous clinical trial publications out there on the web from the last six years if you search on “restless leg opioid treatment” that shows high effectiveness and very little evidence of people becoming addicted and abusing the drug. I have no cravings like that at all.
The only challenges at least here in the US is the shortage oxycodone now as the government is intentionally throttling how much is manufactured to try to rein in the opioid epidemic. Legitimate use of the drug for people that are suffering from various elements are getting caught in the crossfire here the other piece is the stigma that comes with having opioids.
Happy to provide further if you have other questions.
Thanks for your message and that must be so frustrating. Innocent uses being caught up in that, as if we don’t have enough to put up with.
I’m just taking one day at a time to see how I manage. As I’m on a fairly low dose, I’m hoping it won’t be too horrendous, but no to sure it works that way. After being on dopamine agonists for over twenty years ( which is horrendous, now that I know all about augmentation) it just makes me so nervous about taking on anything else.
I’m trying not to stress too much about what happens when I have finally rid myself of them. I’m just hoping that my symptoms, like yours, improve so that it can be managed without too much intervention.
Thanks again for your kind message and I hope your rls continues to be manageable.
I can’t help with info on rls drugs because I refused them all. My RLS also started during pregnancy and also got worse after my second child.
I found it was worse just before my period and because I didn’t have it every night I managed by taking an opioid based pain killer on the nights I did need it.
I am pretty sure my RLS is associated with oestrogen levels. Literally no-one has listened to me. I am now peri-menopausal and my RLS has pretty much gone.
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