I’ve been suffering with rls for about 30 years now. I’m a 70 year old male. I’m currently taking Pramipexole 0.088 x2 per day. I’m frankly very shocked to read the issues highlighted here re augmentation. My dr knows little about this condition and I want to be referred to a consultant who I hope will be able to advise me better.
Does anyone know of such a person please? I live near Oxford in UK.
Best wishes to all fellow sufferers.
Welcome to the forum. Before considering possible consultants - as unfortunately far too few really know any more about RLS than GPs (certainly the couple I saw in Oxford 3 years ago knew nothing!) - have you had a fasting full panel iron test to determine serum ferritin and transferrin saturation? This is the first management step given in the newly revised NICE CKS guidance.
cks.nice.org.uk/topics/rest...
See RLS-UK's guidance on iron therapy:
rls-uk.org/_files/ugd/b0a19...
Secondly, that NICE guidance goes on to recommend to look for "An existing drug that may be precipitating or exacerbating symptoms". Have you seen this list of medications to avoid on RLS-UK:
Thirdly, you'll probably have already read here that NICE guidance has recently changed to advise AGAINST dopamine agonists such as pramipexole - because of augmentation and impulse control disorders - and FOR gabapentin or pregabalin. I note that pregabalin is mentioned on your profile: is this because you have tried it, or because you'd like to be prescribed it?
Fourthly: don't just stop taking pramipexole cold turkey. How long have you been taking it?
Many thanks for responding. I’ve been on Pramipexole for about 10 years. No recognised augmentation so far. I’ve tried pregabalin a while back but probably didn’t give it enough time. I’ve not addressed my Iron levels and will talk to my dr re infusion.
Many thanks. It’s nice to know you guys are out there.
If you tried pregabalin while you were on pramipexole - or you didn't take enough in the evening for long enough - it won't have worked.
I note that Jools has given you a suggestion for a consultant at the JR below - I'm pleased to say that (for your sake) Dr Lennox was NOT one that I saw - and mentioned the dopamine agonist withdrawal schedule on RLS-UK.
Am I able to be referrred to a consultant by my dr or do I need to address privately?
My GP referred me to the Wolfson Stroke & Dementia research centre at the JR after I had a mini stroke- not to a specific consultant - and at the time I got an appointment within a couple of weeks.
What the NHS barriers are to getting a referral now, and what the waiting lists are like now...
I dont know in which department Dr Lennox is based: I'm seeing a listing for a Graham Lennox at the Oxford Headache Service at the JR... Joolsg - any further info?
That's the Dr Graham Lennox.He also does locum work in other areas and has treated someone in Exeter.
Dr Graham Lennox at John Radcliffe in Oxford.Or if you can get to Birmingham or Bath- Dr Bagary at the Barberry Clinic Birmingham or Dr Robin Fackrell in Bath.
The RCGPs have finally agreed to add RLS to the GP curriculum from August 2025.
You can start things rolling now by asking GP to read RLS-UK website- particularly the Useful Resources page on Iron therapy, withdrawal from dopamine agonists and Impulse Control Disorder.
Get full panel iron blood tests- including serum ferritin. Start iron supplements or ask for iron infusion if serum ferritin is below 200ųg/L.
And you can start the reduction process now. Drop half a 0.088 pill every 2 weeks. Ask GP for 60mg codeine, 50mg tramadol or 10mg oxycodone to take for 4 or 5 nights after each dose drop.
Hopefully, by the time you see a specialist, you will be down to just one x 0.088 pill.
Start pregabalin OR gabapentin at that point. Taken at NIGHT only. Most UK GPs and neurologists still mistakenly prescribe 3 times a day. That is for pain. RLS follows dopamine cycle so we only need gabapentinoids at night.
For doses and timings- refer to RLS-UK website. Medications chart.
And list ALL your Medications as many actually cause or worsen RLS and UK doctors aren't aware of this because they have zero training.
Many thanks for responding. I also take a high dose of Atorvastatin 4mg. Is that wrong too?
Just to interrupt: the reason that I was talking to consultants at the JR 3 years ago was because I was put on atorvastatin after a mini stroke and my RLS went through the roof - and they didn't want me to come off!
Statins make RLS worse for most. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS, however don't take it if you have diabetes and then there is Bezafibrate (Bezalip) if you are not is the US and 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.
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.
Ropinirole, 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. NICE in February changed their recommendation to say gabapentin/pregabalin should be prescribed and not DAs so print that out and take to your doctor
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 if needed.
To come off pramipexole, reduce by half of a .088[.125] tablet 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). 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 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 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, 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.
The doctors she lists are excellent. However you will probably have to see them privately as waiting lists can be long. The cost is usually between £250 - £350 but it is worth it.
Did anything happen 30 years ago to trigger the RLS?Is that when you started on statins?.That could have caused RLS.
Usually if you develop RLS at 40 there is a reason. Often it's back or hip surgery or an accident causing loss of blood. Or starting on trigger meds like statins or anti depressants.
It coincided with a marriage break up. Stressful. I can’t remember how long ago I started taking Statins. Is there an alter to Statins that that dr will accept and that works?
Re: alternatives to statins. Sue has already posted much of this, but also see my reply to someone else:
I was prescribed anti depressants at this time.
Are you still on an antidepressant because most make RLS worse?
No not now.
I’ve also had RLS for 30 years, I’m 80 and live in Wisconsin USA. I’ve been taking 150 mg of tramodol for 8 years with great results BUT all of a sudden the medical profession decided that 150 mg was to much. I tried 100 mg for awhile but just didn’t work. My pain doctor gave me 1 mg of pramipexole and it works. I’ve been taking the 100 mg of tramodol and one mg of pramipexole for two years with very good results. My doctor says nothing wrong with taking one mg of pramipexole even though people on this web site say I shouldn’t.
Just don't increase your dose of Pramipexole. After a while, if you start needing more than 1mg to cover your RLS symptoms, it probably means you are augmenting. Maybe you will be one of the lucky people who don't experience worsening symptoms from the dopamine agonist drugs.
help/advice please !
Any advice would be wonderful 
Advice Needed re Serum Ferritin Levels
Advice pls - what to change in my RLS treatment now I’m pregnant & still taking Ropinerole
advice re iron study results
