Hi , Im 66 and suffered with Rls for over 30 yrs. Currently on Ropinirole(about 8 yrs) but def suffering with augmentation . I take 2mgs slow release at 4pm and at 8pm I take 2mgs of slow release and 2mgs immediate release.This was after seeing a private neurologist who doesnt believe in augmentation ! Gp pretty clueless so am going to try and withdraw slowly . I know its going to be tough .Have asked gp for Gabapentin encarbil but any other suggestions ? I read codeine can help ? Your thoughts please
Augmentation: Hi , Im 66 and suffered... - Restless Legs Syn...
Augmentation
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Huntingleroy
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You are taking 1 and a half times the recommended maximum dose. dose. Since the extended release ropinirole lasts for 24 hours I don't understand why you are taking them at 2 different times unless they produce side effects when you first take them. As far as codeine I would recommend buprenorphine instead for 2 reasons. Codeine is not as strong and only lasts for a few hours while buprenorphine has a half life of more than 30 hours. But you are not ready for an opioid just yet.
Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. 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. Have you had 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. If you haven't had your ferritin checked, 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. To come off ropinirole, 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. You will suffer and as you near the end this is when you may need a low dose opioid temporarily to help out with the symptoms . But in the long run, you will be glad you came off it. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several 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 (it is OK with pregabalin) as it will interfere with the absorption of it and if you take calcium don't take it within 2 hours. 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...
Just needed to offload . Its going so badly I wonder how much more I can take . Im down to 2mgs Ropin but not rushing to decrease yet as nights are dire. I take about 900 -1200 Gabapentin and up to 60mgs of codeine but its not touching the withdrawing and legs are horrendous . Sleep is 2 hrs if im lucky. Fell asleep walking the lounge and bumped into a door. Also fell down asleep and scraped my back on sofa. Dr wouldnt change codeine to anything else ! Spoke to neurologist who still likes dopamine agonists so sent him the latest from Mayo Clinic ! He did suggest trying Clonazepam or Dipyrimadole but said about side effects .Ive got a phone appt tomorrow with Gp so need to be ready with a plan ! Any suggestions welcome . Thank you , rant over .
60 to 180 mg of codeine is the usual effective dose. If you take Acetaminophen with it, it increases its potency.
Dipyridamole has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...
You can try clonazepam and it might help your sleep but it has a 40 hour half life so can leave you drowsy the next day. A better choice is Zolpidem.
So right now life is just hell . Im on holiday in france and been up since just before midnight.Tried the usuals but no help.I cant carry on like this .Im down to 1mg ropin and still taking the iron , b12 plus gabapentin 4 times a day . Please help
As I mentioned before you reduced too quickly and if you want to enjoy your holiday, you should go back up to a dose you can live with and then reduce after the holiday.
Thanks I wont bother you again
It's no bother. I am on this forum to help.
HELP ! So the slow wean starts today ! Ive got some 2mg and some 1mg Ropinirole tablets. Ive got to take 1.75 mgs today . Ive purchased some scales which should weigh from 0.001g but when I put a 1mg tablet on it doesnt read 1mg ! Is that because of coatings etc . Am I being thick ? ! The 1mg is so small to cut into 4 and Im trying to be accurate . Angela
Are they the regular ropinirole or the extended release ropinirole?
Regular
Perhaps the scale can be adjusted to read 1 mg. Check the User Manual. However if not just use the amount it reads and divide it by 1/4. If you can't get it exact and it is slightly more, shave off a little to get it to 1/4. If it is not quite 1/4, shave a little off the leftover amount to add to it. However if the difference is small I wouldn't worry about it. To make it easier you can get .25 mg tablets.
I think we have given up on the scales ! Have ordered a good pill cutter. Speaking to dr next week so will ask for .25 mgs . I expect it will depend on the cost ! The 2mgs are much cheaper than the 1mgs apparently ! Thanks
Hi sue, im down to Ropinirole imm release now 1.75 mgs which has been ok. I take Gabapentin pm 2 lots of 600mgs and at bedtime 2 x15mgs codeine and a clomazepan and have had a few whole nights sleep !!! Last evening they were restless and altho got off to sleep ok , only til 4am and legs woke me so got up .Now at 10am they are abs evil! Is this because they want more Ropinirole or is it just Augmentation ? A
Yes they want more ropinirole, but resist. Give it time and it will settle before reducing further. It's hard I know but hang in there. You can do it. Perhaps increase your codeine.
Thanks Sue , you have been great. I know you get a certain amount of grief off people but I trust you 100% . I will try another codeine
Bit of a strange one . Im now down to 1.5 mgs imm release ropinirole. It seems to suit me to take 0.5mgs around 17 hrs and then the 1mg about 2 hrs before bed . What Im finding this week , about 15-20 mins after my pre bed dose my legs that have been really good suddenly kick off . Its almost like they are rejecting the ropinirole. What are your thoughts. Wont change anything without your thoughts ?
No they are not rejecting the ropinirole. Again they just want more. It gets harder as you reduce. I would suggest you increase the codeine since as I mentioned you can take it up to 180 mg. Or since it is hard to cut a 25 mg tablet in fourths, some people have had a compounding pharmacist take the ropinirole and render it into a liquid so they can reduce in smaller amounts.
What I dont understand is my legs are abs fine , I take a tablet and they go mental within about 15 mins of taking it??
Tonight is unbearable. Im down to 1.25 mgs of Ropinirole and ive had a few ok nights but I cant handle it tonight .lve got gabapentin 300mgs , dipyridamole 200mgs, codeine 15mgs and clomazepan 500mcgs . Realistically whats the max I can take on all of them to get me through the next few weeks and the best times before i go insane ?Thanks Sue .
You are reducing too fast. It has only been 8 days since you were at 1.5 mg.Normally it would be 2 weeks. I would suggest you go back up to 1.5 mg and wait at least 2 weeks. Do you have 25 mg tablets now? If so then cut the tablet in half and reduce by that amount. As I mentioned before you can go up to 180 mg of codeine so you have a lot of leeway there. You can increase the clonazepam to 1000 mcg and the gabapentin to 900 mg taking 600 mg 1 to 2 hours before bedtime and 300 2 hours before that, but it is the codeine that should help you most.
I have a pill cutter and 1mg tablets so that works well . I hear what you are saying , I just want to be off them . I took so much gabapentin , clonazepan and codeine last night but it didnt help at all . Ive also got sciatica so no sleep til 5am . I did take 0.25 of Ropinirole as well in the end as I was losing the plot . Thanks Sue
Whens the best time to take the codeine ?
And best time for Ropinirole ? I presume 2 hrs before bed ?
About 30 minutes before bedtime.
Is that 30mins before bed for ropinirole , codeine and clonazepan ? Sorry to be a pain on your relaxing Sunday
30 minutes for codeine and clonazepam and 1 to 3 hours before bedtime for ropinirole. You probably already know the best time for ropinirole from your own experience.
Thank you Sue
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.
Thanks Sue , yes ferritin is good. I do take gentle iron and b12 daily incase it helps . My dosage and times are what neurologist put me on ! As I said he doesnt believe in augmentation !Will follow your helpful guidelines. Thank you
On the iron you probably know this but in case you or your neurologist doesn't: Don't take the tablets at 2 different times during the day as when you take iron, the body responds by releasing hepcidin a peptide hormone which prevents you from absorbing any more iron for up to 24 hours. Instead take both doses at the same time. Take it preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. if your transferrin saturation is below 20, you may need an iron infusion . If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take you iron at night. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. What was your ferritin and your transferrin percentage (TSAT)? Do you know the number? If not ask your doctor for it.
Hi sue , whats the usual effective dose of Buprenorphine ? Going to try and get some today as codeine not touching it .Commence on .5 mg I presume ? Thank you
.5 mg to 6 mg per the Mayo Algorithm
Dr wouldnt give me buprenorphine, prob the cost . Withdrawing is def easing thank goodness. Down from 6mgs Ropin to 2mgs. Legs woke me at 5 this morn so Im guessing thats the augmentation rearing its ugly head . I emailed my neurologist who still feels dopamine agonists play a big part in the treatment of rls . He said if I had any evidence about this he would be happy to look at it !
If he wants evidence print out the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...
That is great that you are down to 2 mg of ropinirole.
Ask your doctor why he won't give you buprenorphine and what opioid he would prescribe besides codeine. If he won't prescribe any opioid show him the section in the Mayo Clinic Algorithm on opioids. I'm not in the UK but I wouldn't think cost would be a reason as he doesn't have to pay it.
I knew it would be tough but I feel as if Im going mad. Im getting 1-2 hrs sleep a night and legs are crazy restless 24/7.Ive also got sciatica so to say im struggling is an understatement. Im down to 1mg of Ropinirole but my body is screaming for more .Im taking paracetemol , codeine , gabapentin , iron , b12 and magnesium but Im not getting any relief at all .Ive started acupuncture as well but no help at all yet , tho she promises great results. Sorry to keep bothering you but I feel Im losing my sanity. How long shall i stay on the 1mg , we go on holiday a week today and would like to feel human again !
If I remember correctly you wanted to reduce quickly to get it over with and now you are paying the price. That is why I always recommend doing it very slowly so you won't suffer so badly. And now it is likely to ruin your holiday. My own recommendation would be to go back up to a dose that you could live with and stay there during your holiday and then start reducing when you are back.
You definitely need a new neurologist. What a dinosaur. He should see the thousands of people currently climbing the walls at night on Ropinirole & Pramipexole. There are a few decent ones in the UK, but it can be hard to find them.Most people on here have had to do extensive research and educate themselves because UK doctors refuse to do so. I'll bet your neurologist us used to treating Parkinson's patients!
Anyway, there is hope once you're off Ropinirole. I had to fight my neurologist to get Buprenorphine. I take 0.2mg at 10pm and midnight. Zero RLS since I started it in July 2021.
But get off Ropinirole first.
Hi Sue, am withdrawing slowly as u said but its pretty brutal with 2 hrs sleep .Have got some codeine 15,mgs and Gabapentin 300mgs. Any advice on doses what to take and when ?My legs and arms are evil . Dont normally hurt but they do today . It will be worth it I know !
Try going back up to the dose you were last on and then reducing by a smaller amount. Use a pill cutter to cut them in 2. You can increase the codeine. It is short acting usually only 3 to 4 hours and much weaker than other opioids. Take right before you need it. If you wake up at night, take another one. On the gabapentin assuming it has been 3 weeks since you started it, you can increase it to 900 mg - 600 mg an hour or two before bed and 300 mg 2 hours before that. However don't expect much from it until several weeks after the ropinirole is out of your system.
Thanks . How long does it take for Ropin to be out of your system roughly ?
The ropinirole will be out out of your system in a couple days but the symptoms from the augmentation will take several weeks which really depends on the individual and for a few can take several months.
I forgot you are on the extended release tablets. They can't be cut which is why you should switch to the regular ones.
Yes ive got both ..thanks
On the extended release tablets they can't be cut and that is the smallest size available. Therefore you should switch to the regular ropinirole and ask for .25 mg sizes so you can reduce by .25 mg at a time.
Wow you know your stuff ! I dont know levels but apparently good . I take my gentle iron in the morning on an empty stomach . My B12 was quite low so I managed to persuade them to give me a course of injections , I now take b12 with my iron . I dont drink alchohol , smoke and have 1 coffee in the morning .When I reach a "crisis" point , I crave food , feel the need to urinate ,body generally very agitated and often itchy . I wonder if you have come across this before? Thanks for your help
Caffeine can reduce the absorption of the iron The reason it is better to take iron at night is that iron is taken up by the brain at higher rates at night. Do ask for your ferritin and TSAT numbers and post them here.
Theres Gabapentin Neurontin and Gabapentin encarbil which is the best one for Rls ? In your opinion is Gabapentin or Pregabalin better for Rls ?
Gabapentin encarbil is 24 hours and since RLS is at night, either gabapentin or pregabalin is the better choice. I usually recommend one start with gabapentin since you can increase it in smaller amounts (100 mg). Once you find the dose that works for you, you can switch over if you want by dividing the gabapentin dose by 6 to get the pregabalin dose. They are basically the same and have the same side effects although some find the side effects that bother them on one don't bother them on the other. Pregabalin has the advantage that you don't have to divide the doses.
Yes A number of people have mentioned this.
Just to clarify , iron is best taken at night , what about b12, when is best time or is it irrelevant ? Also my Ropinirole which I have taken for years as a split dose (16.00 and 20.00) are you saying that prob 2 hours before bed is best time until I manage to wean off it. Neurologist split times when I was clearly augmenting ! As a matter of interest my daughter was also prescribed Ropinirole shortish term in pregnancy as her legs were off the scale.She stopped completely on a Friday as told C sec on the Monday and she was desperate to breast feed .She had no side effects stopping dead at all but sadly her lactation was obvs affected by Ropin . She was taking more than recommended dose as very sleep deprived but was also clearly augmenting .Thanks Sue
B12 can be taken any time. Yes iron is best taken at night. Sometimes they will prescribe split doses so that is OK. That is a shame about your daughter.
Going to try and get some codeine or buprenorphine . Can you suggest dose I should aim for on both and best time to take it. Im thinking of seeing a private gp Tuesday if I cant get into mine which is very unlikely ?
Buprenorphine is best because it lasts a lot longer as codeine's half life is only 3 hours and it is not a very strong opioid. Codeine is usually started at 30 mg and the usual effective dose is 60 to 180 mg. Buprenorphine is usually started at .5 to 1 mg and the usual effective dose is .5 to 6 mg. The best time to take it is right before you need it. Do be aware that buprenorphine can cause dental problems and Joolsg believes the cause is a lack of saliva. Nevertheless it is the best choice of all the opioids. I would suggest printing out the section on opioids in the Mayo Clinic Updated Algorithm on RLS to show the doctor and most are reluctant to prescribe opioids.
Good morning. I can really sympathise with your situation I am in the process of getting off Ropinirole at 0.25mg every 2. - 3 weeks started 23 October 2022 and currently reduced from 6 mg / day to 1.5mg. and can assure you that its worth it in the long run.
I’m astounded by your Specialists comment about augmentation, the trouble is they either can’t or won’t update themselves on the current research and papers written about augmentation and treatments for RLS. If you look up the Mayo Clinic website and their papers on augmentation it will tell you everything You need to know. Do you think your Specialist and or GP would welcome you taking a copy for them to read. The Mayo Clinic is in the USA, so if they are of the opinion that they know better then they could be prejudiced against it. I find that codeine halos tak the sting out of RLS between my doses of Ropinirole. Alternatively change your GP.
Best of luck and good wishes
hello again Huntingleyroy, don’t know how I managed to write Codeine halos tak 🤣, Should have read, Codeine helps take the sting out. Just had a cataract procedure so not focusing properly yet. Sue is right about Codeine so best follow her advise.
Best wishes
Hi hip hop thanks for your comments, yes its crazy as he specialises in Parkinsons and rls yet poo poos augmentation and just shoves the dose up ! Im hoping for at least some codeine or gabapentin but first phone appt is mid june , the nhs is broken here .Take care
What dose of codeine do you take and how often ?
Good afternoon Huntingleroy. I actually take Solpadeine Plus which is the middle strength having 500mg paracetamol, 8mg codeine phosphate Hemihydrate, 30 mg caffeine. The basic Solpadeine has a lower ingredient mix. The Solpadeine Extra has a much higher dose of codeine but I tend to stick with the Plus as that works for me in soluble form. I usually try to limit my use so generally take it in the early hours when my legs want to get me up dancing and then late afternoon to see me through till I take my reduced dose of dreaded Ropinirole.
It’s reported on here that caffeine makes RLS worse, I guess I’m lucky that it doesn’t. It was suggested that I just take codeine in tablet form as it’s less expensive but it didn’t appear to be as effective as the soluble Solpadeine.. We are all different so different medications work differently on each of us but I wish you well in your quest.
Interestingly although caffeine makes RLS worse for some, for some it actually make RLS better.
Hi, Sue. It’s amazing how different substances and medications affect RLS. It’s a wonder how anyone ever gets to grips with it. Please keep up the great work you do in supporting us all, surprised you replied to me re caffeine. It’s like having a guardian angel looking over us 🤣
I just came off taking 3 mg ropinirol after nine years back in February. There’s all kinds of advice about how to do it as far as timeline and other drugs to make taper a little easier. I did it in three weeks employing guidance from Johns Hopkins which leverages all of their history and data points to doing it quicker and shorter vs dragging it out over a long period of time. After the three weeks I then spent two weeks taking nothing, and my symptoms came way way down to a much more manageable level. That allows other treatments like gabapentin Lyrica, or even low-dose oxycodone the latter of which I’m using. This demonstrated to me that augmentation is a very real thing and until you are off a dopimine agonist you really can’t tell just how much it has increased RLS symptoms.
Lovely to hear from you . I must admit I would prefer it to be short and sharp than long and drawn out! Can you give me any advise at all ? I would really appreciate some !
The only advice I can offer is to you have a good support group in place. My wife was incredibly supportive And it was a key piece. This was by far one of the hardest things I ever did in my life and I’m not kidding.
I tapered off a half a milligram every three days and the last week was the hardest. You will get very little to no sleep. During the two week drug holiday following the taper, your sleep will actually improve a little bit as the augmentation symptoms recede.
A number of people have done this using gabapentin and provided a less arduous taper but my doctors said it doesn’t really make a difference.
Lastly, as many others have reported here on this site, it may create a large amount of anxiety which for me kept me wanting to go grab that bottle of ropinirole and start using again. Once you’re off the drug altogether throw away all the remaining meds.
Hope this helps.
Hello 4inthemorning. All I can say is congratulations and well done in 3 weeks. I don’t know how you managed it, I know I was on twice your dosage before I started my reduction and suffered severely at every reduction. 2 - 3 hours sleep a night, falling sleep on my feet and feeling really desperate for the first week of every reduction. I must admit that now I’m down to 1.5mg it’s getting easier with RLS being less severe. Anyway I’m going to carry on and take some codeine to help between doses of Ropinirole as that’s working for me.
But thank you for sharing your experience
Thanks, this is a great site. We all help each other, and I’ve gotten so much out of reading all the posts.
See my response to Huntington above, it was absolutely one of the hardest things I’ve ever done in my life. That desperateness that you experience for me, was naked anxiety, almost like I was gonna die if I didn’t get back on the drug. I’m a trauma survivor, and I always thought that my restless leg was a result of trauma, and this tape experience reinforced that idea.
It sounds like you have things well in control, good luck with the last bit. Peace.
I would like to say this site has been amazing with people with so much knowledge of rls. (I thought I knew quite a lot ! ) My withdrawing is really bad in the evenings , Im still juggling my meds but am getting some good sleep which is a bonus .Thanks everybody
im taking 4-.25 ropinorole quick release at 9.00 pm. takie 1/2- to 1 .325 hydrocodone at 8.pm it helps my aggetation.
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