Hi Everyone, this is my first post but I've been reading everything on this forum for a while now.
I'm in real trouble with augmentation after taking ropinirole for 11 years. I successfully tapered off and was completely free of it by April 2023, however the RLS remained severe, and in October I decided my body had 'had a break' and could restart ropinirole. What a mistake that was! After a month the symptoms were through the roof. I quickly stopped but it's been horrific ever since.
My psychiatrist tried me on pregabalin, but even at 600mg I didn't notice a significant improvement. I've successfully weaned myself off that too.
Because the resulting insomnia has been so awful, I've been taking clonazepam on and off for about 4 years, only recently at a level above 0.5mg. We increased the dose to 1mg in December 2023 to give me some respite, but of course that's no longer quite enough. I really don't want to go any higher, although I've been told 1.5/2mg would be the maximum. The idea of coming off that dose really freaks me out.
At my last consultation we discussed Targinact, and I was told that because my RLS is now classed as refractory, I'm a definite candidate for this. I was started on the lowest dose (5mg/2.5mg), and after a week I can confirm that it does help, albeit for a very short period. The main benefit is that it allows me to get into bed and actually stay there! Previously I'd have been up and pacing the house within 10 minutes. But the effect wears off within 2-3 hours of going to sleep, and then I'm up with the RLS again, walking and crying and Googling new treatments. By the morning I'm a total wreck and somehow have to get through the day. I'm sure the plan is to review the dose after a few weeks, but right now it's definitely not enough.
I found ChrisColumbus post 'Opioids for RLS- some useful information' and was encouraged that Targinact might not be the deadly option I'd feared. But now I'm taking it, I'm really scared. Where will it lead? Will I have to keep increasing the dose as happens with so many drugs? Will I live to regret ever taking Targinact, as I did with ropinirole?
I should probably be more concerned about the clonazepam, but when you're getting only 2-3 hours of broken sleep a night, you become desperate. I'd like to come off it as soon as possible, and I know the Ashton Manual has a protocol for this.
My iron/ferritin/saturation levels are all being checked with a view to a Ferinject infusion, and my psychiatrist is kind, caring and knowledgeable, so I feel I'm in good hands. But I'm still terrified and wonder how much Targinact I'll need to take to get the RLS under control. This condition is destroying my life, my marriage, my friendships, everything.
Does anyone have direct experience of taking Targinact or similar opioids, and can reassure me that it's ok - or as ok as it's possible to be given it's an addictive painkiller?
Thank you all so much!
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Targinact is supposed to last for 12 hours but in fact only acts for about 6 hours and causes mini withdrawals if not taken that often. And 5 mg is a very low dose. According to the Mayo Clinic Updated Algorithm on RLS the usual effective dose is 10 to 30 mg. And at the low doses prescribed for RLS it is not addictive unless one has an addictive personality.
After augmentation on Ropinirole, pregabalin and gabapentin don't help many of us. Dr Buchfuhrer believes that is because dopamine agonists cause permanent damage.I.wasted 5 years on Oxycontin ( Targinact) and I was on 25mg a day. It just didn't help. I still had severe RLS. Oxycontin is supposed to last 12 hours. It doesn't for most people. It lasts 4/5 hours. Then, as it wears off, many people have mini opioid withdrawals, the main symptom of which is RLS. 5mg will not cover severe, refractory RLS. You will need around 20mg. Take it 4 times a day to see if it helps.
If the iron infusion works, you will know pretty soon after.
In 2021, I switched to a long half life, low dose opioid, Buprenorphine. It has been utterly miraculous.
Most people with severe RLS will need meds for life. The good news is that Dr Winkelman's Opioid study shows most people stay on the same low dose for decades, especially if they're on a long hslf life opioid like Buprenorphine or methadone.
But do push for an infusion if your serum ferritin is below 200.
Thanks Joolsg . Your story is really interesting. Maybe everyone has to work out what kind of opioid works best for them. If Targinact doesn't do the trick, I'll definitely suggest Buprenorphine to my psychiatrist. Or would you say Buprenorphine is superior to Targinact because of its long half life? Anything to avoid the mini withdrawals!
Targinact works for many. However, if it doesn't cover your RLS 24/7 at 20mg after one month, don't waste years suffering, like I did. I believed my 'top' UK expert who said there was nothing else available and 4 hour's broken sleep every night was the best I could expect.I'm glad I pushed for Buprenorphine. I have zero RLS on a very small 0.4mg dose & now sleep 8 hour's every night.
I no longer trust or believe UK doctors & neurologists. Until they actually bother to read the Mayo Algorithm and realise that dopamine agonists have to be banned, I will rely on my own research.
The recent 5 year report confirms we are all on the same low dose, with no increase.
Most commonly prescribed opioid is methadone.
Here in the UK, I am aware of an increasing number of doctors willing to prescribe methadone. Dr Jose Thomas at Gwent Sleep Clinic and the MS team at Bart's hospital in London.
Mil gracias. Buprenephrine isn't available in Mexico (in any shape or form) so I am going to my doctor armed to the teeth to demonstrate that I am not a drug seeker and will not become addicted when I request methadone.
I have no direct experience of oxycodone (Oxycontin) or oxycodone with naloxone (Targinact - the naloxone added to counteract the constipating effects of the oxy).
Julie has given you the benefit of her experience with both oxy and bup and I hope this helps. Good luck!
I'll echo Joolsg in supporting buprenorphine. When I weaned off pramipexole, I tried oxycodone first - at 5mg, then 10, then 15 before getting some relief. But switching to suboxone (2mg buprenorphine/.5mg naloxone) gave me instant relief. I've been adjusting dosage to find the optimal one for me - seems to be 1/5 to 1/4 of a strip (.4 - .5mg). The half life is roughy 30 hours vs. 3 hours for Targinact. In fact, I was able to take the buprenorphine every other day for a short while when I first started - it lasted me for 48 hours. That changed after a couple weeks, so I take it daily. It's easy to adjust dose - if you don't get relief within 30 minutes, just take a little more. I've recently tried pregabalin, but that seems to make my symptoms worse. Maybe I'm one of those who have damaged dopamine receptors due to 12 years of pramipexole🤬. So it looks like buprenorphine indefinitely for me. I feel drowsy in the mornings a bit, but other than that, no real issues.
Thank you so much for this - really helpful, and something I can show to my doctor to encourage him to try switching me to buprenorphine. I'm so glad you're getting relief.
One thing I still don't understand is the reluctance to give drugs with a longer half life. My psychiatrist was insistent that the mini withdrawals were almost like an insurance policy against addiction, but I'm past caring whether I get addicted. The constant breakthrough symptoms are so bad I kind of feel like there's no point taking something that lasts for such a short time. I'll discuss all this with him at our next appointment.
Hello Greencatgirl. Like you, after 14 years, I now have refractory RL and I recently started on Targinact. I was prescribed 5mg/2.5 mag twice daily ( 10mg/5mg total daily dose). It became clear after 2 days that a dose lasted about 6 hours , not 12 hours as stated in the leaflet . I discussed with my GP increasing to 4 times daily ,ie every 6 hours (total daily dose 20mg/10mg). She was not keen on this higher dose as the starting dose, so we agreed to 3 times daily ie every 8 hours ( total daily dose 15mg/7.5mg). I take them at 11.30pm, 7.30am and 3.30pm, with some flexibility ; I don't usually get symptoms during the day when I am active, so I can delay the afternoon dose by a couple of hours to cover the evening, for instance. So far, it had worked fairly well. Nights are still difficult, but I have managed to go 8 hours between doses, and my symptoms are less severe than they were on codeine. I have not had any side effects so far. Still early days but I am hoping it will keep working - especially when I finish weaning off Pramipexole. If not, I can increase to 4 times daily.
From reading this forum, Buprenorphine sounds a better option as it is so long acting, but as it is not licensed for RLS in the UK, not many doctors agree to prescribe it. Like you I was very apprehensive about going onto an opioid, but what choice do we have? The effective daily dose for RLS remains a low dose with no risk of addiction unless there is a history of it.
Thank you etchea33. I've been hesitant about taking more than my doctor prescribed, which is just one 5mg/2.5 tablet once in the evening. Obviously nowhere near enough but I understand his wanting to start me at the lowest possible dose. I didn't want to take more without his say so, but hearing how you split the doses has given me courage, and hope. I'll have to 'fess up and tell him I've run out sooner than I should have, but if it works I'll have some solid data to share with him.
I wasn't aware that buprenorphine wasn't licensed for RLS in the UK. Does that mean it's a no go here, whoever you speak to? Or can a specialist psychiatrist prescribe it here?
The starting dose indicated on the NICE website is 5mg/2.5mg every 12 hours( link below), adjusted weekly according to response. So you could take your prescribed dose twice daily for a week, and if it does not work, inform your doctor you want to increase to 10mg/5mg twice daily in line with official guidelines. bnf.nice.org.uk/drugs/oxyco...
Buprenorphine is not licensed for RLS but a doctor can prescribe it off label if willing. It is listed as one of opioids for refractory RL in the Mayo Clinic Updated Algorithm. mayoclinicproceedings.org/a...
Being on benzos as well as opiods may be the reason your doctor is starting out low and slow. Together they can supress breathing so the doc may be hesitant. For this reason, I don't know if I would fess up about changing the dose of the opiod on your own. Sure, most if us do it now and then, but unless your 100% sure your doc won't care i see no advantage. Just ask for an increase to the opiod based on the current dosage not working enough. Use the Mayo algorithm as a guide.On a side note, you will find tapering off the benzo much easier when you are on the opiod.
Thank you ziggypiggy. I seem to be in the midst of a full blown crisis, in that the one 5mg/2.5 tablet gives me 2-3 hours sleep at most, and then I'm back to walking for the rest of the night. I've caught a viral/flu infection and am so ill. I need sleep so badly I just can't go on like this. I honestly think my body is giving up. I don't even have the strength to walk anymore so I roll around on the floor trying to keep my symptoms at bay.
SueJohnson Joolsg etchea33 I'd really appreciate your thoughts on what to do. My doctor gave me 28 x 5mg/2.5mg tablets, with the instruction to take one at 8.30pm. In his letter he says 'This can be uptitrated to 10/5mg in two weeks if needed'. I'm four days in and I know that it does give me a few hours relief. But the additional dose is not only needed, it's needed NOW. But my doctor is now on holiday for two weeks and if I take two tablets a day I will run out before he's back. My GP understandably won't go against his written instructions.
I have the details of one of his colleagues who might prescribe an additional supply in the meantime, but my question to the community, and you guys in particular, is how best to take a second tablet each day to ensure I get more sleep. Is it better to take a double dose at 8.30pm (i.e. 10/5mg), or stick with the one dose of 5/2.5mg at 8.30pm and take a second when I'm first woken with RLS? There doesn't seem to be any point taking it during the day as my symptoms aren't so bad then. It's the nights that are so awful, and I honestly don't have the strength to wait two weeks on the low dose.
I don't want to get it wrong as this is all so new to me and I don't want to be seen as someone who abuses the drugs, but given the tiny current dose, I can't see that what I'm proposing could be dangerous. Thank you all in advance.
It sounds like you've caught Covid, very widespread in the UK now. That will worsen RLS by causing inflammation.Take the Targinact twice a day, at 9 am and 9pm. I know it sounds counterintuitive, but the Oxycontin only lasts 4 or 5 hours. It DEFINITELY doesn't last 12 hours.
Ideally you should take it 4 times a day to avoid mini opioid withdrawals, which cause worsening RLS.
Then call your GP on Monday and explain that Targinact is supposed to be prescribed every 12 hours under prescribing guidelines, but that members of RLS-UK forum have confirmed it has a short half life and is needed 4 or 6 times a day. The average dose of Oxycontin is between 20 and 30mg a day for RLS. Explain how desperate you are and take a video on your phone to show the GP.
In your case, do ask your GP for Buprenorphine pills. In the UK, only dopamine agonists and Targinact are licensed for RLS. Pregabalin and gabapentin and all other drugs are prescribed 'off licence' which means your doctor has to have a good reason to prescribe. Buprenorphine is 'red listed' in some UK health areas, which means only a specialist can prescribe and monitor it. As evidence, doctors can use the RLS-UK website and the Mayo algorithm.
There has been a trial of Buprenorphine by Dr Berkowski in the USA. Send it to your doctor.
I persuaded my GP to give me a 3 week trial of Buprenorphine. She called twice in first week to check. As it stopped ALL RLS and I slept every night, she put it on repeat prescription. Sleep heals.
You either need 5mg Targinact four or six times a day OR a low dose of Buprenorphine. Buprenorphine has the lowest risk of respiratory depression.
I just noticed from your bio that you have gut issues. Start Symprove as that will help the ulcerative colitis and it can build up your immunity. It costs £40 a month on an annual scheme.
Thank you Joolsg. I can't tell you how grateful I am for this advice. So much detail to go armed with to my GP. I read that you're in London (I am too), so does that mean buprenorphine can be prescribed here or does it depend on the borough?
One question though - why take a second dose in the morning when daytime symptoms aren't really an issue? Could it not be taken in the night when RLS first wakes me up?
The 12 hour dosing is to stop mini opioid withdrawals. Oxycontin was marketed as a 12 hour drug. So if you only take it once every 24 hours, after 12 hours, you get mini opioid withdrawals, the main symptom of which is RLS.It's clear from the hundreds of posts on here that some people find Oxycontin (the opioid in Targinact) only lasts between 4 and 6 hours. That was confirmed in all the films/dramas about the Oxycontin scandal. It does NOT last for the 12 hours.
There are some who metabolise it more slowly, and they get adequate cover taking it twice a day, without opioid withdrawal symptoms.
Others find they need to take it every 4 to 6 hours.
I was on 25mg. I used to take 10mg at 9am, 10mg at 9pm and 5mg at midnight. I wasted 5 years suffering badly, with severe RLS every night from 7 to 9pm and several episodes from 3am until 7am.
But, we all react differently to Oxycontin. It is specifically licensed and prescribed to be taken every 12 hours.
I'm in Merton. My GP surgery was willing to prescribe Buprenorphine. However, other London boroughs may be different. For example, I cannot get medical cannabis on the NHS for my MS, but my friend 2 miles away in Lambeth can.
We all joined this forum with zero knowledge, usually because of drug-induced worsening on dopamine agonists and because our GPs knew zero.Then you realise that unless and until you read all the research and learn everything you can, you will be treated badly by most UK doctors.
I joined in 2016 and everyone was so helpful. They warned me not to touch another dopamine agonist as I'd quickly augment very quickly. I got off Ropinirole and my MS neurologist demanded that my GP prescribe Oxycontin and pregabalin to help.
I had asked to see the 'top' RLS doctor, Professor Ray Chaudhuri. An appointment came through for 5 months after I had finished withdrawal from Ropinirole.
The FIRST thing the specialist clinic at King's College Hospital suggested was Rotigitone. They didn't mention iron. They insisted rotigitone wouldn't cause augmentation. But I knew from the many, many reports on here that it quickly causes augmentation again. King's wouldn't listen. That clinic is STILL prescribing dopamine agonists when people have been through hell. Then they tell patients it is natural progression of the disease.
It isn't!!!. They refuse iron infusions as well, even though it's first line treatment for many as per the Mayo Clinic Algorithm.
I followed the Mayo Clinic, Dr Buchfuhrer and Shumbah and pushed for Buprenorphine.
My RLS went from 38/40 on Oxycontin and pregabalin to 0/40 with Buprenorphine, on the RLS Scale.
As Dr Buchfuhrer ( a top US expert who has written a great book on Clinical Management of RLS) says, if any UK doctor tells you that your RLS cannot be totally controlled (for 97% of us) they really are not RLS experts.
Only Dr Jose Thomas in the UK has the same updated knowledge as the top US doctors.
We really need more doctors and neurologists here in the UKbto read the latest research on dopamine agonists, iron and low dose opioids.
Many GPs, especially the younger ones, are keen to learn and will listen to us and read the latest research.
Oh Joolsg, our stories are eerily similar. I also saw Ray Chaudhuri, probably a year or so before you, and received the same advice. How he can still be considered the UK's top expert on RLS is beyond me. The doctor I've been seeing for the last year - Dr David O'Regan at Sleep London - has helped me come off DAs and told me categorically not to touch them again. But still his advice was to start on one 5mg/2.5mg tablet of Targinact. I suppose he was being cautious and wanting to see whether I tolerated it before up-titrating, but I am now wondering whether to contact Dr Jose Thomas as several people have said the same positive things about him as you have. Tbh I have never even tried talking to my NHS GP about any of this. I can't believe for a second they'd prescribe opioids without the guidance from a specialist consultant, and yet some people obviously have managed to convince their GPs. I'm so desperate that I'll use our life savings if it gets me the proper treatment quickly. Thank you again for your concern and kindness.
Oh Greencatgirl, I am so sorry you are feeling so bad at the moment. Your doctor is obviously not familiar with the NICE guidelines which state: every 12 hours, adjusted weekly according to response. Taking 5mg once daily is not going to help. I am on day 4 of taking Targinact . I knew from this forum that it is only effective for 5 to 6 hours and I explained it to my GP who agreed for me to take the starting dose ( 5mg/2.5mg) 3 times daily ( total daily dose 15mg/7.5mg). A dose indeed usually only lasts about 6 hours and I take it every 8 hours, which means there are a couple of hours when I am not covered. This is not a problem daytime when I am usually symptoms-free, and I manage the gap evenings /nights with various diversions, especially now that my symptoms are far less severe than they used to be before Targinact - when, like you. I used to roll on the floor while trying to watch TV. Sometimes, I get no symptoms for 8 hours.
If the lowest dose (5mg) gives you relief for a few hours, you could take another dose when your symptoms start again - after 5 / 6 hours?- up to 3 or 4 times a day. You would still be below the maximum effective daily dose of 30mg. If you can do without for a longer period during the day, you could time evening / night doses closer together to give you a better night's sleep. It is OK to be a little flexible as long as you keep within the recommended dosage. You could perhaps try this for one or two days ? You should be able to get an additional supply of Targinact if you point out that the once daily prescription you were given goes against the NICE guidelines.
Thank you thank you. Honestly this is so helpful, especially your advice about timing doses. My main problem now is getting someone to prescribe more tablets for me while my psychiatrist is on holiday. I'm contacting a colleague of his tomorrow, so information like this will hopefully encourage him to help. I am beyond grateful to this community.
Yes. I take Targinact every 8 hours but it only works for about 6 hours - as everyone finds . In the two hours where I am not covered , I am either physically busy and have no symptoms ( daytime ) or, if I have symptoms ( night time), I find a distracting activity / put up with those symptoms which are a lot less severe than they were before the opioid. Not a totally satisfactory situation, but a big improvement . I will reassess when I am off Pramipexole.
I am very new to this forum but not unfortunately new to restless legs !! Mine started at 15 years old with the jerking. Thinking l was dying, l told my mother who promptly told me that it was hereditary, that she had it, and just to get in with it !! 50 years later, l'm still having to "get on with it"!!. I only really know about Ropinirole, having been in it for 5 years now. Like you, my dose has slowly been increased to 3mg per day. It sort of works for about 6 hours but not all the time. But the worse thing is how drowsy l get on it. Currently my GP is reducing the Ropinirole and starting me on Rotigotine patches as l am experiencing augmentation with Ropinirole now. I have little faith that the patches will make any difference. I've tried everything and anything over the years and feel what works for some doesn't work for others . Sometimes l think l've cracked it but, in the end, the restless legs break through again. I wish you well with Targinact sorry l don't know enough about it's doses to give advice. Having read the replies, unfortunately it seems a lifetime on medication awaits us all.
And finally, the label "Restless Legs" is far too weak, l think it should be renamed "Torturous Legs" as it is utter torture.
Please ask your doctor to read about RLS. By switching you to Rotigitone patch, your suffering is being prolonged.I don't know ANYONE who hasn't also suffered augmentation on the patch.
It would be better to get off ALL dopamine agonists NOW. You WILL augment on the patch and as it's a long lasting dopamine agonist, getting off it is more difficult.
So please go back to your doctor, ask them to look at the Mayo Clinic Algorithm and RLS UK website.
RLS-UK are trying to stop doctors prescribing dopamine agonists.
They are too dangerous.
Did your doctor explicitly warn you if the very high rates of Augmentation and Impulse Control Disorder. If not, tell them that there have now been hundreds of successful cases against UK doctors for prescribing these drugs without warning.
Money is the ONLY way to force doctors to stop prescribing these drugs.
Did your doctor do full iron.panel, morning, fasting blood tests to ensure your serum ferritin was above 75ųg/L as set out in NHS and NICE guidelines? If not, again that is not following best UK treatment.
Raising serum ferritin above 200 by pills/iron infusions helps the majority of RLS patients.
Please, please read ALL you can. UK doctors blindly follow the BNF book and prescribe dopamine agonists BUT they have zero knowledge of the damage these drugs cause.
Pregabalin and gabapentin are now first line meds after iron treatment.
I 100% agree with Joolsg. Please stop dopamine agonists as soon as you can. If you are already augmenting after 6 years, your body is telling you something. I also agree that, for me, pregabalin provided some relief, albeit not enough to be a long term solution. Please give that a try, in addition to all the testing suggested above.
Thank you Joolsg. I'm amazed at your RLS knowledge, thank you. I have been low in iron in the past but never really connected it with RLS, or have the doctors. But weirdly, my iron levels are normal at the moment even though my RLS has gone nuclear !! I do feel the Ropinirole has been poising me, but no doctor ever warned me about augmentation. I will bombard the GP with a epic list of questions this week. Many thank again
GPs will say iron levels are normal if your serum ferritin is 15!!! Ask for actual numbers.15 is way too low for RLS. We need levels over 200. But as GPs aren't taught RLS and never bother to read NHS guidance, they are unaware most RLS patients need iron supplements /infusions.I personally know 3 people that I've met for coffee in London and advised to get an iron infusion who are now 80-100% better, WITHOUT meds.
If everyone with RLS were given an iron infusion on diagnosis, most would be RLS free.
Dolly, most regular commenters on here have researched extensively, so they are very knowledgeable about the latest treatments and research. There are excellent websites and books.Start with the Mayo Clinic Algorithm.
As you had RLS at 15, your RLS is most likely caused by low iron. Iron infusions dramatically improve RLS in 60% of cases. They were first used successfully to treat RLS in 1953.
Formulations now are very safe. Getting an iron infusion on the NHS is difficult, unless you live near St George's in Tooting or the Royal Cornwall in Truro. Private infusions cost around £800 at the Iron Clinic in Harley Street.
Your starting point should be to read all posts headed Ropinirole or Pramipexole. You'll see that EVERYONE comes here to report drug induced worsening, caused by Ropinirole/Pramipexole.
The top US experts are very clear. These drugs ALL result in augmentation. Dr Earley has made a video clearly stating that everyone taking any dopamine agonist WILL see their RLS worsen.
Many of us are RLS free.
Some do well on pregabalin/gabapentin. Some are med free after successful iron infusions. Some do well on Oxycontin.
Many of us are now taking Buprenorphine or methadone at low dose.
So please learn all you can.
RLS isn't taught at ANY stage in UK medical training.
It's disgraceful. RLS-UK campaigned in 2020 to get it taught to GPs, as most people only ever see their GP. The RCGPs dismissed us & said GPs would know how to treat it! Unbelievable.
Welcome to the forum. You will find lots of help, support and understanding here.
I agree 100% with Joolsg but let me add a few things to what she said.
To come off a dopamine agonist (DA) like ropinirole (I know you are not completely on ropinirole but bear with me), 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 may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
To come off Neupro (rotigotine) you can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. Easiest way is to draw lines on it. This will equal the .25 mg reduction since 1 mg of Neupro = 1.5 mg ropinirole,. Or you can switch back to ropinirole which you are already on. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce.
Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole or rotigotine 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 as the peak plasma level is 2 hours. 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) Most of the side effects 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
As Joolsg said 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...
On the full panel iron test which is not the same as a test for iron. 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 and have the test stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. 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 some advice although as Joolsg said an iron infusion is best as it will quickly bring your ferritin up and will help with getting off the DA.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
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.
Hi Sue, My mind is blown !! So much information, thank you. I feel l've been so naive over the years with regard to my RLS. I always thought there was a hormonal element to it as well, having started with it in puberty, then worsening in pregnancy and worsening again during the menopause. Unfortunately, having a son with special needs, he has been my priority for many years, and my restless legs were just my restless legs, nothing that would kill me, just there. Your list of things that may help RLS and things that don't, again l can concur with a lot of it really. One thing which l have never thought of ias a trigger for RLS is eating late at night. I actually often eat in the middle of the night, it's an inherited thing from my father. Never connected that with RLS. Also, l've tried a weighed blanket, magnesium, compression stockings, hot/cold, decaf tea and coffee, and putting a bar of soap in the bed (an American idea!!) I have also been having 12 weekly Vit B12 injections for years, because my body doesn't absorb it, but during lockdown, my surgery refused to let me have it and l went about a year without it. They prescribed Vit B12 in tablet form which was pointless as l don't absorb in orally. I haven't actually started on the patches yet. Having read all my replies on here and the "booklet" that came with the patches, l'm very reluctant about them. I will see the GP this week and suggest reducing the Ropinirole slowly like you suggest. I think pregabilin was mentioned by the GP so l will mention that . I have had regular iron/ferritin tests in the past but never been told us it was a"full panel iron test" l was having. ? Just a full blood count ? Maybe it's the same thing l don't know ?Thank you again. I will pick through all this info l have gained from you all and be fully armed with it in the future.
Call your GP and insist you are referred asap and get the full iron panel tests.
If GP refuses, you may have to go privately. Professor Toby Richards at the Iron Clinic in Harley Street would arrange iron infusions and B12 injections.
Sadly, the NHS is struggling at the moment so getting help is even more difficult!
Thank you Joolsg. I am back on Vit B12 injections and have been for a while. I missed our on about three injections be a use of lockdown. At the time l really fought with the GP about it, even suggested l stood outside the window of the nurse's room and stuck my arm through the window to her so she could inject me without me entering the room or the surgery !! But no, that wasn't allowed be a use of COVID. My neurology consultant was not at all happy with the decision to stop the injections of Vit B12.
Sue, does this mean that oestrogen taken as HRT could also be a culprit? I use four pumps of Oestrogel daily and it had never occurred to me that it might be a problem. I'd rather dry up and be a wrinkly old crone than live with RLS, so maybe it's worth trialling a period without the gel.
I know the pain you go through I have RLS since my early twenties but as long I was active it was bearable later in live it went beyond my control and I had to do something after several trails now I’m for just over three years on Targin 10/5 and 25mg pregabalin twice a day it works if I take it in time . I hope it works for you too
I am glad you have reached out to this site as i did and it will give you help & support so do not be scared.
My experience follows the usual "route". Various DAs (last one rotigotine patches), augmentation and refractory RLS. I then was prescribed Targinact and went to maximum non additive dose of 25-30mg per day (6x 5mg tablets). A small but insufficient reduction in RLS resulted and little if any change to poor sleep regime
Following the advice and support of Joolsg , Sue J, Lotte and others i changed to Buprenorphine with fairly quick success. You have to work hard on your GP to get it here in UK. I started with patches but now on tablets ( i found patches hard to "control" ). Like Joolsg i take 0.4mg (2x 200mcg tablets) per day which is below the minimum dose in US Mayo institute algorithm which I believe is 0.5mg/day.
Hi Davchar, thanks for this encouraging message. You've also answered my question about whether buprenorphine can be obtained in the UK.
Yes, this forum is amazing. The information I've found, the helpful responses I've had to my post, but more than anything the knowledge that I'm no alone and that there are people out there who understand the full horrors of RLS.
Low-dose (10mg/day) methadone therapy instantly changed my life. I went from 2 hours of sleep per day to 8 hours. Five years later and haven't felt the need to increase the dosage. I'm in the US; in the UK, you're more likely to find a doctor willing to prescribe buprenorphine - they're both good because of their long half-life. At these low doses, you don't need to buy into the anti-opioid fear.
Hi, I originally started on Targin many years ago for back problems and it completely stopped my rls for about 4 mths. Double the dose you are on though. I was thrilled, then stopped working so we increased to 15mg at night and 10 in am. Then that also stopped working so I switched to Bup patch.
Personally I preferred the Targin over the Bup. It lasted roughly 10hrs with me, no constipation or side affects. Am having many with the patch and now thinking of maybe trying Targin again after a 12mth break.
Hi , i came off ropinirole finally in Oct after horrendous augmentation . I was suicidal but im nearly sorted . I take 300mgs gabapentin at 18.30.at 20.30 i take another 600mgs and 2mgs Clonazepam .At bedtime I take 300mgs gabapentin and 5mgs of Targinact. I was put on it 10am and 22 but i was a bit zombyish ! I take to bed with me 300 of Gabapentin and 5mgs Targinact and if i do wake about 3am ish i take both and then back to sleep. I had to.go private to get targinact in the uk but worth every penny and now on his nhs books so finally life is looking sunnier . Good luck , its tough
Thanks for sharing your story. I'm currently right in the middle of the suicidal bit. Not enough Targinact to touch the symptoms and waiting for my doctor to return from hols to up the dose. Plus have a viral infection which won't go away because of the lack of sleep. I have to trust it will all get better. Reading your post was helpful.
Just wanted to apologize to you as l realize now that l really should have created my own "chat" instead of joining yours re Targinact. Put it down to me being a "new girl" !! All the best.
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Tapering Ropinirole - the last stretch
My ongoing RLS battle
