Hello, I am a 50 year old female living in the U.K and have suffered with RLS since first becoming pregnant 30 years ago. RLS gradually got worse and worse and I was pout onto Pramipexole about 8 years ago. I am now taking 0.088mg x 2 every evening and this works really well. However the dose has increased from 1 tablet to 1.5 and now 2. I read about augmentation and went to see my GP as they have never reassessed my medication. I asked about changing medication to Gabapentin or pregabalin and was told these are unlicensed in the U.K and can not be prescribed. I was offered Ropinirole as an alternative. My ferritin levels are 31 and I am working on these to increase. I am vegetarian, so makes it harder! What are my options please? Thank you for your help
Changing medication advice please - Restless Legs Syn...
Changing medication advice please
Change doctors.!
Jools or Sue will tell you what literature to show this "carer".
AFAIK the HSE guidelines are woefully out of date, so your doctor may not be completely out of order.
You also badly need an iron infusion.
Good luck.
Welcome to the forum. You will find lots of help, support and understanding here.
Your doctor is wrong. Yes it is off label but it can still be prescribed. Point him to the Nice Guidelines which talks about gabapentin being prescribed for RLS. Also the AASM Guidelines at jcsm.aasm.org/doi/pdf/10.56...
You are smart to want to come off pramipexole.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole reduce by half of a .088 [.125] tablet)(ask for a prescription of these if needed) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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.
Ropinirole and pramipexole 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 up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After you are off pramipexole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime 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 or magnesium-rich foods, 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 nor calcium-rich foods 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)."
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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Your ferritin is very low. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take it every other day as more is absorbed that way 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 magnesium rich foods), calcium (or calcium rich foods) 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. 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 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. You can also get one privately by paying for it, but it costs around £800.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Hi Sue and thank you so much for your reply. It's not slow release which is good. I am due to see GP this week. Would it be worth getting a referral to a specialist to discuss further or are they behind the times too? The Royal papworth Hospital is near me and has a sleep centre with an RLS specialist. If I can get the Gabapentin and reduce the pramipexiole, at what point do I start taking the Gabapentin? As for iron I take Ferrous Fumerate 210mg in the morning with vitamin C. Other irons really upset my stomach. Thank you
Hi Tami, very sorry to hear about the medical treatment you have received. We must first ask you about any other medications you are taking such as SSRIs or PPI. Please take your iron at night on an empty stomach about two hours before bed. It may actually provide you with some decent amount of relief in about an hour when taken this way. You see, RLS has less to do with ferritin and more to do with something called serum iron, which plummets at night. Oral iron taken this way is as effective, if not more so, than an infusion. Also, it is believed that RLS during pregnancy has to do with hormones, like prolactin, much more so than ferritin levels. Many many pregnant women get RLS during pregnancy despite healthy ferritin levels.
An infusion during pregnancy, or after, does not cure, or even slow down RLS. At most, and best, it may temporarily lessen symptoms. Doubtful though. Side by side comparisons during recent clinical trials show oral iron slightly more effective at lessening symptoms than infusions in anemic patients. The most recent large scale study with infusions conducted by a world renowned RLS expert showed that infusions were no better than placebo at helping people lower or get off the RLS medications, or at improving quality of life for RLS patients.
Our experience on here has shown that the most effective way to get off a DA is with the use of Tramadol and iron at night.
Hello, no other medications. I will start taking the iron at night thank you.
Tami, did your RLS stop at any point after pregnancy?
Yes! Soon afterwards and was ok until my second pregancy and then got gradually worse over the years...
Yes, now it is making sense. If low ferritin during pregnancy was the cause, RLS wouldn’t resolve shortly thereafter. Is it fair to assume your RLS got worse (a lot) around menopause? Are you taking HRT? I ask only because a lot of women forget this one when thinking about medications they take.
I just noticed you said you are 50. So at age 42 you went on a DA. You likely wouldn’t be on HRT unless you had a hysterectomy? 42 is young to have RLS severe enough to warrant a DA. Though we do see this with co-morbid illnesses like hypothyroidism. You don’t have a co-morbid illness, right?
No HRT or co morbid illnesses
DesertOasis's method taking it every night only applies if it stops your RLS for that night only. For some this works. For most it doesn't. If it doesn't stop your RLS than take it every other night and try to get an iron infusion.
Sorry I can't see a rep[ly about taking it every night?
I recommend taking iron at night because for many of us it provides some, to complete relief, in 1 to 2 hours after taking.
healthunlocked.com/rlsuk/po...
healthunlocked.com/rlsuk/po...
An infusion didn’t do much for this woman, but the iron at night trick does . An infusion will be a huge waste of your time and money and goes against your doctor’s recommendation:
healthunlocked.com/rlsuk/po...
Here are other members of the Ironman Club:
healthunlocked.com/rlsuk/po...
This is one small aspect of your case. We need to get you off the DA. Like I said, you will definitely need tramadol at some point as you taper down ever so slowly. The problem I’m having is trying to figure out why at age 42 you needed a DA. That means to me when you stop the DA you will still be left with severe RLS.
Yes I have no idea why I have it
Did the iron at night provide any relief.
Only tried it once so far, will try again tonight thanks
That’s the thing, oral iron should provide a decent amount of relief, even that first night, within about an hour of taking it the specified way.. As you get closer to being completely off the DA you may not notice much relief, but you should now. That’s where Tramadol comes in.
The favored form of iron is ferrous bisglycinate - 56mg - which is 300% of recommended daily dose. Anyways, see below:
I would see Dr. Mike Davies at Royal Papworth sleep clinic as he has been recommended by DickJones on the forum. However in looking at this further he had PLMD so Dr Davis may not be an expert on RLS although they are treated the same. You could message DickJones and ask him questions about his experience. The main reason I had him in my list of doctors was because he prescribed buprenorphine which many doctors won't.
Start the gabapentin 3 weeks before you are off pramipexole.
Jaysus. Every day we hear horror stories like this. Total ignorance and negligence because of lack of teaching in the UK.This is why RLS-UK campaigned in 2019 to get the RCGPs to teach the basics. The RCGPs refused to update teaching. So we now have tens of thousands of UK patients condemned to drug-induced worsening of RLS.
If a dopamine agonist stops working and you have to increase the dose, it's the first step to MADNESS. It also increases risk of Impulse Control Disorder.
We have members who have lost homes, families, jobs to gambling and spending addictions (Impulse Control Disorder) caused by Pramipexole/Ropinirole.
Has your GP warned you about augmentation or ICD? Hundreds of GPs have been successfully sued by patients affected by ICD. Mention that to your GP.
Your GP should have given you iron therapy 8 years ago- not Pramipexole.
Once they start you on dopamine agonists, iron therapy AND gabapentinoids do not work as well in the future and then we are left with low dose opioids.
Your story is INFURIATING. 8 years ago, I joined this forum to get off Ropinirole. The GPs have learned sweet FA in that time, even though the world's experts have moved away from dopamine agonists and released the Mayo Clinic Algorithm and the new American Academy of Sleep Medicine Guidance. Dopamine Agonists are now 'end of life' drugs amongst experts.
Here's a doctor who actually knows what he's talking about explaining what happens if ignorant doctors keep increasing the dose ( or switching you to more poison).
sleepreviewmag.com/sleep-tr...
So, what can you do?
As your GPs are being difficult- first look up NICE cks guidance. It's guidance , so GPs can ignore it. Pregabalin and gabapentin are prescribed 'off label'. Your GP CAN prescribe it, but is at risk if anything goes wrong.
It puts dopamine agonists AND pregabalin and gabapentin as FIRST line medication.
Send an email with links to RLS-UK, Mayo Clinic Algorithm, new AASM guidance and NICE cks guidance. Ask your GP to reconsider. Tell them the USA has moved away from dopamine agonists. Tell them RLS-UK has officially moved away from dopamine agonists and follows the Mayo Clinic Algorithm and the new AASM guidance because of the huge numbers of UK patients experiencing augmentation.
The August 2024 survey by RLS-UK showed that over half the patients on dopamine agonists were experiencing augmentation.
rls-uk.org/post/rls-uk-surv...
If they still refuse to get you safely off Pramipexole, change doctor.
You might have to see a specialist privately as waiting lists are over a year. There are only 4 or 5 in the UK we would recommend. Most UK Neurologists are as behind latest research on RLS as GPs.
cks.nice.org.uk/topics/rest....
There is a withdrawal schedule for Pramipexole on RLS-UK website under 'useful resources'. There's also a page on iron therapy. Print them out and show to your GP.
And learn ALL you can. Knowledge is power.
Oh and with a ferritin level of 31 and being vegetarian- you need an iron infusion. If you had been given one when pregnant or shortly after the birth, you would most likely NEVER have needed medications.
Your serum ferritin needs to be above 100ųg, preferably 200ųg.
Take ferrous bisglycinate every other day to raise your serum ferritin and brain iron levels more quickly.
Wow Jools. That really got you going!
I would be banned for such a strong opinion--- I'm still waiting for HU to respond to my queries about being reported by someone on another forum, but it is like talking to a stone wall-- no response at all. Because I'm in another jurisdiction it is pointless to take a legal route. And anyway ,I'm only being picky!🥴
Rant over.
Fair play to you Jools-- I agree 100% with you.
It is getting beyond pathetic, when we have cretins caring for our health.
I am so tired of this constant battle for such simple protocols for a dis- ease that affects so many people.
I think, if I was living in UK, I would tent up outside whatever institution that is responsible for the stagnation in medical education, and go on hunger strike.
Shame on them.
Apologies if I've offended anyone-- "who has a heart". Apologies also to Dionne Warwick ❤️
Hi Jools and thank you for replying. The GP's in UK seem to know nothing about RLS and no they never said to up my ferritin levels or warned or augmentation! When I saw GP 2 months ago and asked to be reviewed he said to up my pramipexiole as symptoms were getting worse, when I questioned this and asked to change medication he said no need and augmentation was very low risk. He wouldn't even refer me to a specialist as said to save my money as he could treat this! I am going too ask to be referred again and happy to go private if it helps. So frustrating to know about iron now and so wish I knew these facts sooner. Thank you for your reply
It's a nationwide scandal. Your GP clearly knows nothing if he is unaware that the main cause of RLS is low brain iron. Pregnancy uses up 1000mg of iron. No wonder so many women first experience RLS during pregnancy.Pregabalin is prescribed in many UK areas but it depends on your local 'formulary'. S.E London and SW Londom formularies both allow Pregabalin for RLS. So ask your local pharmacist -or google your area to see what the local formulary rules say.
Augmentation rates are VERY high. Here's the NICE article with rates of Augmentation. 7% per annum CUMULATIVELY. So by year 10, over 70% will be experiencing severe RLS caused by the drug itself. For your GP to state augmentation is low risk is either blissful ignorance or obvious negligence.
Simply show him this:
cks.nice.org.uk/topics/rest...
You can self refer to a specialist if you are paying privately.
The only specialists I would suggest are:
Professor Matthew Walker at UCL, Queen Sq, Professor Guy Leschziner at Guy's London, Dr Robin Fackrell at Bath, Dr Chris Murphy in Salford and Dr Jose Thomas if you live in Wales. They all do phone or zoom appointments.
But, we do stress that even these specialists are STILL prescribing dopamine agonists. No idea why. Some of them still mistakenly believe that keeping to the minimum dose or switching to the Neupro patch avoids augmentation. That is clearly not true- as you have found. The lowest dose stopped working and you had to increase. Dr Andy Berkowski, a top US expert has a great website and talks about augmentation and the problems with Neupro patch a lot.
Take some time to look at his videos.
Withdrawal from Pramipexole isn't pretty. Your GP will not realise that. Withdrawal is more difficult than getting off heroin or crystal meth. It involves weeks of very severe, all over body RLS, violent body jerks and zero sleep for around 5 days.
It's set out in the RLS-UK withdrawal schedule. Many people cannot make it & give up. You are young and will get through it. But, it does get better with each day you're off Pramipexole. And once you are completely off the drug, the RLS reverts to what it was before you started Pramipexole. That's when the pregabalin or gabapentin should work. If they don't work after around 3 months, you may have to take a low dose, long half life opioid.
So plan the withdrawal carefully. Take time off work/social engagements for 3 to 4 weeks after the last Pramipexole dose. And arrange for a friend or family member to stay up with you for the first 4 nights after you drop the last dose of Pramipexole.
The specialist will prescribe pregabalin or gabapentin to start around 4 weeks before the last dose of Pramipexole. And hopefully, will arrange an iron infusion asap. They will also give you a low dose opioid to take at each dose reduction to help reduce the withdrawals. You can take them for 3 or 4 nights until symptoms settle.
Also which specialists do you recommend please?
Christ almighty! This is the best respond I have seen about the topic! You are so spot on with this! My husband struggles with rls and he has been at few different GP’s they all useless! We are trying everything to help him , when he can’t sleep he takes 10mg diazepam and it usually helps him with sleep and rls
Sorry to hear your husband suffers too. It is so horrid!
For your information, I attended the Royal Papworth sleep clinic a couple of years ago, had an overnight stay to observe RLS and apnoea. It was before I was aware of this site and the depth of information on it. The doctor there prescribed ropinirole, so don't assume they are necessarily clued up. Thank God I only stayed on it a short while, thought it was ineffective anyway. I currently manage RLS without medication (take enough as it is for other conditions) using Therapulse and stretching exercises to lessen effects.
Thank you, I will have. look at the Therapluse as not heard of that
It doesn't seem to work for everyone but for me it was a game changer, and for an outlay of £40. The pulses give those twitching nerves and muscles something to deal with and they back off.
See my revised answer on Dr Mike Davis.
Thank you, just read this. Seeing GP tomorrow so will ask for a referral.
I live in Edinburgh and was prescribed pregabalin with no problem at all so I suggest you see a different doctor, good luck 👍
Strange GP is wrong on pregabalin they can prescribe, do not take Ropinirole or that family of drugs,under any circumstances as it will increase RLS, your ferritin levels are really low in a person not suffering RLS, I am veg, iron levels are often low, I started at 70 currently taking iron supplements to get it above 100 at least, since stopping ropinerole my RLS has become so much better, i use therapulse on my legs if an attack starts and this seems to stop RLS
Great advice from the brilliant folk in here.
In case it’s not above, this is the NICE guidelines link:
cks.nice.org.uk/topics/rest...
Many of us are on gabapentin or pregabalin. Low dose opioids too (but that may be harder to get)
Get informed, print it out take it to GP, advocate for yourself. Good luck. Loads of support in here x
yes but it says “or” gabapentin etc. Perhaps see if you can talk to a different gp in the practice. Gp’s prescribe off label all the time (well that’s my understanding)
The new guidelines of medical professionals is working as a team with your patient. You have a voice and a right to have the treatment you want. I know it’s hard. I was very lucky that my GP was happy to be guided by me as he could see I was much more informed about RLS than him and I cited all the information.
You have had so much brilliant advice, as always on this forum, that I can only add my understanding.I developed RLS when I was pregnant (a typical time for RLS to start) & my legs got worse & worse & I too was put on pramipexole & then neupro patches & suffered terrible augmentation.
To be fair to the medical profession 40 years ago pramipexole was the drug of the day.
40 years on I am now on gabapentin. I would definitely ask to be referred.
Help with changing Meds please.
Changing Medication 
Advice on RLS as a reaction to medication? 
Medication change
Statins
