RLS Consultant in London

[Firenze1]

Good morning. I'm seriously considering seeing someone privately about my RLS and wonder if there's anyone fellow-sufferers can recommend please? I've taken Ropinirole for over 15 years and, as we know, it becomes less-effective and all I'm doing is increasing the dose. Any help or advice would be much appreciated 👍

[Biscuitface]

Try Professor Matthew Walker, Queens Square,London

[Firenze1 in reply to Biscuitface]

Thanks.

[SueJohnson]

You may be aware of this but it bears repeating: Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. Up to 70% of patients will suffer from augmentation which you are obviously suffering from and need to come off the ropinirole. . It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an iron infusion post your ferritin and TSAT numbers and we can give you some advice. 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. But in the long run, you will be glad you came off it. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin) daily." If you take magnesium take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of it and if you take calcium don't take it within 2 hours. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it Https://mayoclinicproceedings.org/a...

[Firenze1 in reply to SueJohnson]

Many thanks for all the information! I'll have a good read-through later. Unfortunately GP appointments in my area are very hard to come by. If you're 'lucky' you can have a telephone consultation and, to be honest, that doesn't work for me. As you quite rightly say, many doctors don't know much about RLS. I worry if I stop taking the Ropinirole they won't prescribe anything else!I'm 'happy' to see a specialist who knows about and understands RLS however I couldn't afford to do this on a regular basis.

[Joolsg in reply to Firenze1]

Believe me, no drugs are better than being on Ropinirole. It makes the RLS extremely severe. It over stimulates D1 dopamine receptors and they scream out for their dopamine hit. That is why your RLS is getting worse. Don't let anyone prescribe another dopamine agonist like Pramipexole or the Neupro patch. They will quickly cause the same problem. Report the worsening RLS via Yellow Card scheme so medics are aware how dangerous these drugs can be.

yellowcard.mhra.gov.uk/

Follow SueJohnson advice and get off it.

Look at Dr Andy Berkowski's site which explains why these drugs are so bad. The more you read up on RLS, the better treatment you will receive because GPs and neurologists in the UK aren't taught about RLS .

relacshealth.com/

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Firenze1 in reply to SueJohnson]

The only thing that gives me relief is to move around. Not ideal in the evening when I want to settle down in front of the telly and I've watched many programmes recently in a standing position. Most off-putting for my other half!!I've had no recent changes to prescribed medication.

I think the main issue/cause is the Ropinirole

[Joolsg in reply to Firenze1]

You're correct. Ropinirole is the culprit. Classic augmentation (increase in severity of RLS).

[SueJohnson in reply to Firenze1]

Just because there are no recent changes doesn't mean some may be contributing to your RLS. Again if 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. Also OTC supplements.

[Firenze1 in reply to SueJohnson]

I take Atorvastatin and Ramipril

[SueJohnson in reply to Firenze1]

Ramipril is fine. Unfortunately all statins make RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. 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 although the FDA does show it increases RLS for some people and then there is Triglide which seems safe. 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.

[Ephemera]

My husband has seen a lovely specialist called Dr Dhanjal, but he is busy. He was very helpful and understood. He ask our GP to prescribe opioids.

[Jelbea]

As Biscuitface suggests Prof. Matthew Walker, Queens Square, London

[Marlayna]

Sue and Jools I am so grateful for your patience and kindness with every newcomer arriving on this forum. Thank you!!

[Lola43]

I saw prof Walker in london and he would only let me try the neupro patch. So I’m stuck to - just waiting for the lovely augmentation- on the joy! I’d suggest someone else perhaps. He’s very hard to try and get hold of if you have difficulties- his Secretary will stop you getting hold of him. I thought it would be my saving Grace, but perhaps try someone else first

[pennygates in reply to Lola43]

Hi Lola, I'm sorry to hear about your disappointment after consulting Dr Walker, the RLS specialist in London. As you say, we pin our hopes on a good RLS specialist. Did Dr Walker tell you why he prescribed this patch for you?You must have been disappointed that you couldn't contact him easily afterwards. Especially when it must have been quite expensive for the first consultation.

[pennygates in reply to pennygates]

Hello again Lola,I've looked around the site to find out more. I was very shocked to see that Professor Walker, a leading RLS specialist in the UK, still promoting dopamine agonists as a treatment for RLS. I honestly think we are screwed in this country, if I can say that. He will know (one hopes )about augmentation down the line, which you wouldn't put anyone through knowingly?

I won't be making an appointment with him, although I've heard he has prescribed other treatments. Not worth the risk. I'm coming off Pramipexole myself right now. I have low dose opioids (for severe arthritis), which is lucky, but could be taken away at anytime in this climate. I have started taking Gentle iron every evening, recommended by SalemLake. Didn't have much confidence, but what the heck. My GP said I didn't need iron supplements. I have given it a try, and from the first night it has worked very well for me. Still little breakthroughs but very short The help and support from other members, Sue and Joolsg, has been invaluable, and many others. I would rather put my trust in them.

[Firenze1 in reply to pennygates]

Oh dear. Not feeling very inspired about seeing Professor Walker. It's very costly and as I'm already taking Ropinirole I'm not sure if he's the man for me!? I don't know what to do

[pennygates in reply to Firenze1]

I feel the same Firenze1. Can't see the point in seeing a RLS specialist who is still prescribing DAs. However he may still prescribe more recent treatments, but a bit of a risk, and it costs.I have heard good things about another specialist in Bath, from a couple of members, who have given good feedback. I cant remember their names. However the specialist is Dr Robin Fackrell, Bath neurologist, Open Circle Hospital.

Getting to Bath is difficult for me, 8hr journey by train. Don't know if he does video appointments.

[Firenze1 in reply to pennygates]

It's a tough one isn't it?? Seems 'unfair' we have to travel and incur a lot of expense in order to try and get much-needed help. Local specialists seem to have RLS on their list but they also have other ailments listed which makes me feel they know a little about a lot whereas I want someone who totally understands

[Biscuitface in reply to Firenze1]

I've been having telephone consultations with Professor Walker for two years. Initially I had Augmented on Pramiprexole and my gp prescribed Buprenorphine patches but would not let me have Buprenorphine sub lingual instead unless I found a Neurologist who would prescribe them. I experienced dreadful anxiety on the patches. Professor Walker did discuss the Neupro patch with me as a treatment option but I firmly declined . He was fine with that. He wrote to my gp directing him to let me have the sublingual instead of the patches. He has since recently referred me for a Sleep Study and an Iron infusion. I have no complaints

[Firenze1 in reply to pennygates]

If a specialist prescribes Pregablin, for example, would I then be able to get it from my GP?

[pennygates in reply to Firenze1]

Yes, that is likely, but Joolsg knows more about this than I do. Just read a post from a member in Ireland. He has had several appointments with Dr Walker via video, and is taking Bupenophrine. Confusing isn't it?

[pennygates in reply to Lola43]

Lola have you heard about the Sheffield Adult Neurological Sleep Service,. It specialises in RLS. It's an NHS hospital, and as you will know, being a nurse, you can ask to be referred by your GP. They welcome referrals from out of the area.

[Kaarina Administrator in reply to pennygates]

sth.nhs.uk/neurosciences/ne...

I think this is the correct link, pennygates.

[67Waterman]

I see Professor Matthew Walker, Queens Square, London ... but to be very honest, you will learn more from this site and reading and understanding the Mayo Clinic Algorithm than Professor Walker can provide. But at least you will be able to get "into the system" of being prescribed other drugs (Pregabalin) that your GP is not able to do.

[pennygates]

I have found an NHS sleep clinic in Sheffield.

Google Sheffield Adult Neurological Sleep Service

[Hoochybaby]

just a warning to do your research well in going private

Some years ago because I could get no relief for my rls on the nhs I decided to go privately to get relief I was prepared to spend money

I went to a BUPA hospital to see a neurologist. He indeed said I was suffering from severe restless legs and prescribed Pramipexole starting with 0.52gm and increasing by another0.52 gm after two weeks and subsequently another 0.52 gm until my rls was under control. I did as he suggested and my rls “ disappeared “. I had never heard of augmentation and it wasn’t until the pramipexole “stopped “ working I found this forum and understood what augmentation was all about.

The neurologist had obviously never heard about augmentation either but the good folks on this website helped me through the hell of coming off pramipexole and I’ve never touched this drug again

[pennygates in reply to Hoochybaby]

This sounds depressingly familiar. It's like a game of chance, finding a specialist on RLS, who is up to date with newer treatments.

[Biscuitface in reply to Hoochybaby]

I initially also saw a Neurologist at BUPA after I'd I Augmented who wanted to put me back on Dopamine Agonists. I politely suggested he stop there. I told him this was no longer first line treatment and if someone augments on a DA they will augment again if they are prescribed another. I was in the room 10 minutes and it cost me £200

[Hoochybaby]

Yes I paid over,,two hundred I consider it a rip off,!