hi I’m new here so if I put anything on that I shouldn’t I apologise. My gp & neurologist haven’t got a clue . I have been on ropinerole for years I’m now on 6 mg every night which does most of the time work , however they want me off it , tried to put me on pramipexol I reacted badly to it I’ve also reacted very badly to gabapentin in the past . I’m feeling lost when it starts rsl I am in a living hell as I’m sure are all of you . Any advice would be very much appreciated x
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Welcome to the forum.
First off, have you had a recent fasting full panel iron test measuring serum ferritin and transferrin saturation? RLS sufferers often have low brain iron and supposedly 'normal' ferritin levels need to be raised to combat RLS. Doctors generally dont know this. See this:
rls-uk.org/_files/ugd/b0a19...
Secondly, are you taking any other prescribed or OTC meds which could be triggering RLS/making it worse:
Thirdly, you may have read here or elsewhere that dopamine agonists - ropinirole, pramipexole and rotigotine - are no longer recommended for first line treatment of RLS because of the dangers of augmentation (making RLS worse) and impulse control disorders. Even NICE CKS guidance has been updated recently, so your doctors should NOT be trying to move you from your already criminally high dose of ropinirole (the max recommended daily dose for RLS is 4 mg) to pramipexole.
You need detailed guidance from others here on coming off the ropinirole VERY slowly - your doctors will probably not be competent on this either! See this
rls-uk.org/_files/ugd/b0a19...
- and on switching to a gabapentinoid or a low dose opioid.
When you say that you reacted very badly to gabapentin what was your experience? How much did you take, what time of day did you take it, how long did you try it for, were you still taking ropinirole at the same time?
It is possible that gabapentin or pregabalin may not work after years on ropinirole, so you may need a low dose opioid. But you'll get much better advice from e.g. Joolsg and SueJohnson.
Hi yes gaba I was given for shoulder pain violently sick migraine just horrible prank after 2 days did the same thing I’ve just been given iron as I’m low my other meds are , atoravastatin , escitalipram , do hydra codine, 3 inhaylors . OTC mullin , origarno, Mac Pro for eyes, condriatin , magnesium. I’m taking 6 mg because 4 do not touch me . However I really would love to get off this med having read up on it x
If you read that link on medications to avoid that I gave you'll see that virtually all antidepressants - including escitalopram - make RLS worse for most: trazodone and bupropion are generally safe, although the latter is quite difficult to get prescribed for depression in most NHS areas.
You'll also see that statins - particularly in my experience atorvastatin - make RLS worse for most. In my case FAR worse. Doctors tend to say that there are no alternatives to statins, but you'll read in that link that there are several. I got my Oxford based consultant and GP to switch me to ezetimibe which was effective (if slower working than the statin)
Well I didn't know that about Atorvastatin! Been taking it for years. Inclined to drop it and try ezetimibe. Thanks for that Chris
Like most drugs, bad side effects such as RLS - including those from atorvastatin - are not universal. And the alternatives to statins don't suit every case of high cholesterol either. But if your doctor will agree, a trial of an alternative *may* help reduce RLS symptoms and still reduce cholesterol levels
Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce it as fast as the statins, however don't take it if you have diabetes and then there is Bezafibrate (Bezalip) if you are not is the US. Nexlizet combines ezetimibe with bempedoic acid. And there is Fenofibrate (Triglide in the US) which seems safe. Berberine may help if it is mildly elevated. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
thanks Sue
As to the need to take more and more ropinirole to 'help' RLS that's a classic sign of augmentation. This will only get worse. Coming off and switching to an alternative med is difficult but can be done. Download and read that piece on DA withdrawal that I linked to, but wait for further advice from Joolsg , SueJohnson and others who have far more experience of drug treatments than i do (I'm lucky enough never to have taken meds for RLS)
The atoravastatin and escitalopram are RLS triggers. When did your RLS start?
We often see patients experience RLS shortly after starting anti depressants like escitalopram. See my detailed reply.
My rls is inherited, I’ve had it as long as I can remember my depression more recent. I will copy your reply if you don’t mind ? Up until rop I have tried various things bought various things it’s always been on going . I have various issues including long Covid ! I also have not faith or trust in doctors x
And quite right too.Your RLS is very severe and getting worse purely because of Ropinirole.
These dangerous drugs have now been relegated to 'end of life scenarios' by the AASM guidance. And UK NICE cks guidance has changed their guidance to follow the AASM.
RLS-UK has campaigned for years to.get RLS taught to doctors.
As a result of recent adverse publicity in newspapers and on TV - finally the Royal College of General Practitioners has agreed to add RLS to the GP curriculum from August 2025.
Have you experienced Impulse Control Disorder? Overeating, overspending, gambling or hypersexuality? It affects 1 in 5 patients on dopamine agonists.
There have now been hundreds of successful legal actions against UK doctors for negligence for failing to warn of the very high rates of ICD.
no I haven’t had any of those I would like to thank you for the time you have given me today x
The low mood/depression can be caused by lack of sleep, increase in RLS. Be patient with yourself. There's a lot of advice and helpful guidance here. As you go through things, learn more, address any iron deficiency you may have and getting on to the right treatment you may find your mood improves.
I'm still on 0.088mg x 2 Pramipexole morning and evening.. I have tried to ditch it but because I live on my own with no support/help the damage and inability to even stand if I reduce the dose is a serious issue. I was told to 'get on with it'! But at 79 with other post Covid complications, it's just not possible. Yes and ICD deffo was part of my existence but how do you ever prove it??
The legal team appoint forensic accountants who go through your spending before and after Pramipexole. If you want to take legal action- definitely contact
Kimberley.Bradfield@switalskis.com
She will also advise you whether you have a negligence case for failure to get you off Pramipexole safely.
GPs dole out dopamine agonists like sweeties and they NEVER bother to research the severe, common side effects. Augmentation should be high on their knowledge list & they SHOULD help you off Pramipexole safely.
If you are unable to get through withdrawal- you need to see a neurologist who will prescribe Buprenorphine now.
You start 0.1mg Buprenorphine sublingual pill as you drop half a 0.088 Pramipexole pill.
That is the only way someone of your age can safely get off Pramipexole.
And plan ahead for Buprenorphine side effects.
For nausea- get a medical cannabis prescription. I used 0.3mg at night for around 10 days then slowly reducec over a week. Nausea had gone.
For constipation- have magnesium citrate or oxide ready. Or chia seeds every day and cauliflower.
For opioid sweats and opioid panic attacks/anxiety/alerting use a small dose of pregabalin (50 - 75mg).
Where are you so we can recommend a good neurologist?
Yes they gave it me in increasing doses since around 2000. I have DrJohn Partridge at Stoke who's pretty clued up but any nearer ones to Northwich would help. I will hopefully be allowed to give all the details on here, to the now young GPS we have at our Med Centre
Hi I was only on prami for 2 days & was so ill I didn’t take any more & I’m so glad now x
Absolutely. No competent doctor would prescribe another dopamine agonist once you are experiencing drug-induced worsening.
What you can do is get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a TINY bit of the tablet and measure it. Then reduce by that amount every 2 weeks. That way you will hardly even notice the reduction and won't need any support at home.
Dr Muhammad Rafig neurologist at Norfolk and Norwich University Hospital will prescribe buprenorphine.
wow this is all so helpful Thankyou
Yeah mine too Percypickle! Curiously it runs through the female line in my family but then I believe it is caused by a dominant allele. In times gone by it was called the Fidgets!
I had been taking citalopram for years and all of the sudden I developed RLS in 2015. Had to stop taking it. I take Wellbutrin now.
I have heard this before. Often it can take months/years before the RLS is triggered. And someone reported that they increased the dose of anti depressants and THEN the RLS appeared.
First - get rid of your useless, negligent GP and neurologist.I despair at the total lack of knowledge.
Any doctor who increases Ropinirole to 6mg and tries to switch you to another dopamine agonist needs to go back to school.
There is a lawyer who wants to bring a test case for clear negligence against UK doctors who fail to recognise and treat drug-induced worsening of RLS (augmentation).
You are an excellent candidate.
Here is her email.
She will act on a no win/no fee basis.
It is appalling that lawyers know more about RLS and how to treat it properly than most UK doctors.
Could you tell us the neurologist's name so we can add to our 'bad specialist' list?
There are only around 10 UK neurologists who are up to date on RLS.
Kimberley.Bradfield@switalskis.com
Augmentation has been widely known about since 2008.
The medication leaflets expressly mention it.
Here's the correct treatment:
1. Arrange full iron panel, morning, fasting blood tests. Raise serum ferritin above 200ųg ideally via iron pills every other night or infusions.
2. Review & safely replace all medications that cause or worsen RLS. Main culprits are Anti depressants, sedating anti histamines, cough & cold meds, diuretics, statins, beta blockers, diuretics and PPI gastric meds.
3. If 1 & 2 don't help- start pregabalin or gabapentin at night only.
4. If 3 doesn't work- start a low dose opioid.
Ropinirole and Pramipexole are no longer prescribed for RLS because they worsen the RLS symptoms over time. That's what's happening to you.
So- find a new GP and neurologist. Or ask your GP to up date their knowledge and help you through withdrawal.
The withdrawal schedule is set out on RLS-UK website under Useful Resources.
Start now. Drop 0.25mg every 2 weeks. It will take you at least 6 months to get off such a criminally negligent high dose.
You will need an opioid to settle the increased RLS at each dose reduction.
We can recommend one of the 'good' doctors. Where are you?
Show your GP the RLS-UK website, the new NICE cks guidance which advises AGAINST all dopamine agonists, the Mayo Clinic Algorithm and the new AASM guidance.
All links below.
mayoclinicproceedings.org/a...
aasm.org/new-guideline-prov...
Thank you you are all so knowledgeable here & very kind x
We all learned the hard way after suffering severe augmentation and our GPs & neurologists knew ZERO.Many nembers of the forum have spent years researching RLS & following the top experts in the USA.
And sadly, many of us have lost trust in the medical profession.
I haven’t commented on my situation because all the advice seems so complicated. I have suffered with RLS for many years and have been on 4mg roprinirole for most of them. Like most others on here the relief is very hit and miss and I have approached my gp with my concerns and come away fobbed off every time. Most recently, last week he said he would change me to pramipexol but then said he couldn’t do that he would have to refer me to a neurologist, he referred me and then the neurologist has to triage me to see if I warrant an apt. If I do there is a 12 month waiting list. Cut to the chase, how do I find a “good gp” who is aware and able to help me. I also have fibromyalgia which is severe enough to impact my life significantly and I had a heart attack 2yrs ago. I am desperate and welcome any advice. I live in Stockport Cheshire uk
You live near one of the few 'good' doctors.Ask GP for an URGENT referral to Chris Murphy in Salford. Or pay £300 to see him privately & he can direct your GP. Chris M will prescribe iron infusions and Buprenorphine.
GPs are generally poor. They aren't taught anything and aren't aware that Ropinirole actually feeds and worsens RLS. They have to learn RLS from August 25. So-teach them earlier. Just print off the Iron therapy, withdrawal and ICD pages from RLS-UK website and the new NICE cks guidance and ask GP to update their knowledge.
But start reducing NOW. 0.25mg every 2 weeks. Ask for a prescription of 0.25mg normal release pills.
No need to wait.
Ask for the full panel iron test as per Iron therapy page & raise serum ferritin via ferrous bisglycinate eveey other night.
Ask GP to prescribe a low dose opioid to help you reduce Ropinirole. Take 60mg codeine/50mg tramadol or 10mg Oxycodone for 4 or 5 nights after each reduction.
Omg thank you for giving me some hope. I just didn’t know where to turn for help. It is such a distressing condition, rules and ruins your life and to be fobbed off time and time again is demoralising. I look forward to posting more positively Thank You x
Ropinirole is the reason your RLS is SO severe. That stuff & Pramipexole & the Neupro patch are poison.I was in your position in July 2016. I joined this forum & Elisse, Pippins & Madlegs explained that the Ropinirole was making my RLS worse.
I told my stupid GP who said 'What's Augmentation?' And 'I hope you haven't been using Dr Google'.
Thank God I did!
I quickly realised GPs know zero. And are condemning tens of thousands to unbelievable suffering.
So- realise that YOU have to do your research. You can't trust most GPs.
Nor can you trust most UK neurologists.
There are only around 10 in the entire UK who have bothered to read/research the latest treatment from the USA.
I promise that your RLS will improve once you are off Ropinirole.
It is a difficult journey. Withdrawal is hell. But knowing that the RLS WILL reduce in severity and you will find meds that work for you will keep you going.
I am now taking 0.4mg Buprenorphine. Since 2021. I have zero RLS ever. Night or day. And I sleep 8 hour's a night.
As a top US expert says- 98% of RLS patients can be RLS free with the RIGHT doctor using the RIGHT tools.
And as you are so close to Chris Murphy- you are in the RIGHT place.
More and more neurologists are finally realising how dangerous dopamine agonists are.
Read all you can.
Start with RLS-UK website.
And the Mayo Clinic Algorithm.
And the NICE cks guidance.
The more you know- the better you can direct your doctors and refuse the wrong treatment.
Here are starting links.
mayoclinicproceedings.org/a...
cks.nice.org.uk/topics/rest...
There are 2 textbooks you can buy that are easy to understand as a non medic.
The latest is by Andy Spector.
Thank you x
Welcome to the forum. You will find lots of help, support and understanding here.
I agree with everything Joolsg says. Let me give you my usual advice which repeats much of what she says but expands a little on it.
You are suffering from augmentation and need to come off the ropinirole.
Ropinirole (requip), pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.
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 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.
On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. 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 divide the doses on 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. 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)."
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 or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).
Have you had your ferritin checked? If so what was it? This is the first thing a doctor should do for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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 ferritin and transferrin saturation (TSAT) numbers and reply back here with them. 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. If you can't get an infusion, let us know and we can advise you further.
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...
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 without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Agree with Jools 100%. You need the right team to support you through this. RLS is a horrible condition, made worse by medications that shouldn't be prescribed and Drs who don't take the time to learn about the condition or treatments.
Very sorry you're dealing with this, think many if not all of us have at some point. You'll get through this, you just need to be a bit proactive now to get the ball rolling in the right direction.
Good luck! You can do this, look through the forum and you'll find many that have.
Welcome to the forum. You will find lots of help, support and understanding here.
I agree with the others. Let me give you my usual advice which repeats much of what they say but expands a little on it.
4 mg is the maximum dose of ropinirole so you are on 1 an a half times that amount and by definition are suffering from augmentation.
Ropinirole (requip), pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.
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 may need to increase your 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.
What did you mean by just horrible prank?
Since gabapentin gave you migraines you should try pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.
The beginning dose is usually 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 and your withdrawal symptoms have settled. After that increase it by 25 mg 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.
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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg of pregabalin."
Have you had your ferritin checked? If so what was it? Also what was your transferrin saturation (TSAT)? This is the first thing a doctor should do for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.
The chances if you're doctor said you are low on iron is very good that your ferritin is low but you do need to be tested. And depending on your results you may need an iron infusion to quickly bring it up and which will help your withdrawal.
What iron have you been given and how many mg?
Take your iron with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it helps its absorption. And you can also take apo-lactoferrin which also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day, 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 you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers ferritin and transferrin saturation (TSAT) numbers and reply back here with them. 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. If you can't get an infusion, let us know and we can advise you further.
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...
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 without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Sue i’m still on a minimal dose of Pramipexole 2x0.088mg morning and evening. i reduced from escalation over 16 years to 5g and resulted in very severe augmentation …. Coming off it was so horrific and unmonitored that i had to give up …. i was a full time carer at that point. i now live alone and without that small dose even , my symptom affect all my skeletal muscles and i’m unable to walk …. iveanother significant health problem TBM from Covid damage that i have to manage. i have a Consuktant at Stoke but getting to see him is impossible …. no one understands the urgency of RLS …. Even a medic on 111. totally minimised it recently when i was in trouble with my chest….. At the hospital they took my Pramoff me and i didn’t get it back for 36 hours . The hospital pharmacist said there was no urgency because RLS was a trivial matter….. i have that recorded on my phone …. i find this ignorance … even when we are in trouble and giving the medics inforamation ….. i now find this behaviour negligent. it happens over and over again
i really don’t know what to do
Are you taking a total of 4 tablets? If so that is the maximum dose.
If you need it in the morning you are already augmenting as that means you have symptoms during the day which you shouldn't have.
The problem is that you need a replacement to cover your RLS that doesn't bother your TBM if you come off pramipexole.
Gabapentin is much much less likely to have an effect on your TBM than other choices but there is also the possibility it won't work since you have been on pramipexole so long and it won't work while you are on pramipexole nor until any withdrawal effects have gone.
If gabapentin works but causes problems with your TBM you can try switching to pregabalin although gabapentin is less likely than pregabalin.
If it doesn't work then see the things I mention next:
You will also need something to help your RLS while you come off pramipexole especially as you near the end. Edible cannabis, not inhaled cannabis, will help and has a lower risk of respiratory depression than buprenorphine which is the safest opioid which you will need if edible cannabis is not enough. The other opioids are less safe. But you would still need to be monitored to see how it affects your TBM.
You can get edible cannabis from curaleaf clinic curaleafclinic.com/ It is not cheap - £50 a month. Most people recommend Indica
Instead of seeing the doctor I previously recommended, I would recommend you go to Manchester and see Dr Christopher Murphy.
The other alternative assuming you are only taking 2 tablets a day is to continue as you are currently doing recognizing that you may have to increase your pramipexole as time goes on. And the problem with that is that you will probably reach the maximum and coming off it when you are older will be harder to do and the longer you are on it the more likely gabapentin won't work.
Yes I am taking 2 x 0.88 twice each day in am and pm. I have come down from at max 5g in 2016 when I became so ill but no one recognised Augmentation at that time. It took 18 months until I met a Neuro privately at The Walton Centre, Liverpool who had RLS himself and admitted that no one at the centre knew about rls. He recognised what was going on and effectively to come off it Cold Turkey .. telling me it was like coming off Cocaine. He listed a lot of drugs that could support me and sent a letter to my GP who was totally lost. I was a Carer for my husband who had Dementia and tried the 'Cold Turkey' route becoming so ill I couldn't stand within three days. Everyone told me to continue but no one wanted to ensure I was safe. That's when I found the USA group having searched UK and only found two specialists in Harley Street charging a fortune beyond my means and reduced DOWN to 0.88 x 2 (3.52), twice a day over 6 months. I tried Pregablin in this time but had a serious response to it which affected my breathing although surprisingly Gabapentin is better.
I believe its a good idea to meet with Dr Murphy sooner rather than later. With having other issues I have to be very careful, as you clearly recognised, what I take. I really can't afford to go Privately but if he has massive waiting lists there may be no other option ..... I cannot afford to let my local hospital either mess with my RLS meds as Leighton, Crewe has done. I have a red passport the hospital created stating this but many doctors won't read it.
Thank you do much for your help Sue
There probably is a long waiting list on the NHS to see him, I don't know what he charges for a private visit but the usual fee is £250 - £350.
Yes I have heard about the Walton Centre and have it on my do not recommend list.
As the others have said statins make RLS worse for most.
Nexlizet (Nustendi ) is a cholesterol lowering drug that is not a statin, Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce it as fast as the statins, however don't take it if you have diabetes and then there is Bezafibrate (Bezalip) if you are not is the US. Nexlizet combines ezetimibe with bempedoic acid. And there is Fenofibrate which seems safe. Berberine may help if it is mildly elevated. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
The advice on the anti depression you were given is correct.
The hydrocodone should help with your withdrawal and you may need to increase it especially as you get near the end.
Hi I hope when your docs moved you on to Pramipexole they told you to stay on Ropinirole but gradually over more than a month wean off it. mine didn't! So I had violent reaction as docs are ignorant. Anyway Pramipexole should not be prescribed since Two months ago. You need to give them some advice! Get on to Gabapentin but WEAN off your present drug. (17 years experience of these dangerous and useless dopamine agonists. Good luck with weaning. It is hard but a MUST!
Hi they did tell me that but in the 1st week I was really poorly on it so I stopped . I’ve also been really poorly on gabapentin . Which they gave me for pain . I’m slowly cutting back in rop which I’ve been on over 10 years x
Just wanted to give a bit of hope to anyone presently trying to wean off a dopamine agonist. I started 16 nights ago to reduce Pramipexole, under a most understanding and helpful new doctor, just half a tablet a night for 10nights - so from 2 x 0.088 Pramipexole to 1.5 tablets, BUT before then take 600mg of Gabapentin. This is taking both drugs on the same night. I had awful withdrawal nights, as to be expected , with no sleep and jumpy body every 13 seconds for hours. Hard not to give up. Then I reduced another half tablet on the 11 th day, so down to one tablet, but had the same symptoms for five more nights, but maybe less jumpy Again, hard not to give up. .
Then last night I felt very different with no restlessness, just 4 little jumps! I coukd relax without being anxious and had lots of sleep . I have never ever had such a good night in all the 17 years I have been taking and trying different DAs. The difference is that this doctor told me I must wean gradually of the first at the same time as trying out the original drug, whereas previously I have taken a new drug in place of the original.
I am really hoping that tonight will be good again, and it will continue. Could it really be working and I have conquered the withdrawal symptoms? Watch this space.! I am not used to being hopeful!
The odds are pretty good that because of how long you had been taking dopamine agonists, you'll eventually discover that a prescription of low-dose buprenorphine will be the only thing that will bring you out of your misery. Best of luck in getting it prescribed: few doctors have the necessary courage/education to do so.
Hi, Why do you expect doctors to help, they were nhs blinkers, If rls comes on at night in bed bend your legs up to your chest ,then you may feel where the sensation pain in your legs are coming from, try a tubular support bandage{boots} on that part of your leg I found it helps to get to sleep. see my posts to try other treatments to see which suits you ,there is no quick fix,but i'm in control of it now.
Hello Percypickle. Welcome to the forum where you will probably find everything you need to know about RLS. You may well benefit from joining RLS - UK who are a registered charity and the anual membership fee is extremely reasonable.. About 5 years ago I was in your position taking 6mg Ropinirole a night and suffering the most horrendous Augmentation and it took my joining RLS-UK and attending an AGM on Zoom to be told that I needed to withdraw from Ropinirole and it probably saved my life. I’d suffered for over 40 years and all the medical professionals did was load me up with Dopamine Agonists both Neupro patches then Ropinirole. There is light at the end of the tunnel and I won’t lie to you, it is a long dark tunnel and it took me 13 months of sticking with reducing by 0.25 mg every 2 to 3 weeks but it is possible and I had no other medications to help me through apart from Solpadeine. If you get the right Consultant who knows about RLS who will prescribe something to help with the withdrawal then it will be easier. Joolsg is the person who could help with this as she has a list of Consultants who deal with RLS hopefully near your locality. She is terrific and a fund of information and a great help to me. The positive side of withdrawal is that you do start to feel better the further into the journey you go.
If I can do it so can you, I don’t have a particularly strong will, but you have to want to do it. I can say my life has changed dramatically, I now have a life and so does my Wife as RLS affects loved ones as well.
You may need to start with a Private Consultation as they are very busy, mine near Manchester has an 18 month NHS waiting list.
My thoughts are with you as will everyone on the forum who suffers from RLS and the criminal ignorance of the Medical Profession HipHop1972
Thank you I have started reducing now you are all so knowledgeable I feel a right dumbo but you live & learn x
Hi Percypickle, you most certainly are not a Dumbo, none of us knew what we were dealing with as Doctors knew nothing so were little or no help. So we all had to start somewhere with our own research and finding this wonderful forum with members who have already done the hard work so can provide the knowledge and support we should have received from the medical profession. So please never put yourself down, we live and learn.
Very best wishes HipHop1972
You've tried iron infusion?
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