Hi, I am new to this forum and I'm sure this has been asked many times but are there any specialists in the UK to be referred to for RLS?
I've had RLS for 30+ years but my symptoms are getting out of control with it happening during the day as well as evening. I take 88microgram Pramipexole in the eve which tends to kick in by bedtime and helps me to get some sleep but have read about augmentation and worry this is happening due to the worsening symptoms. I'm also on HRT and not sure if this is contributing to the effects ...... basically so many questions and just need to talk to someone about a way forward.
Any help would be very welcome, thanks, Sam
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samd5555
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Hi Sam and welcome. There are no RLS specialists in the UK.There are a few neurologists who know more than the basics and they will do phone consultations.
The problem in the UK is that neurologists are behind best treatment as set out in the Mayo algorithm.
If you're augmenting on Pramipexole, some UK neurologists simply increase the dose or switch you to another dopamine agonist, which will also cause augmentation quickly.
Read all you can, starting with the Mayo algorithm and look through the RLS UK website. The top experts in the USA wrote the algorithm and most now refuse to prescribe Pramipexole, Ropinirole or the Neupro patch because of the extremely high rate of drug induced worsening of R and the permanent damage they cause to our dopamine receptors. Dr Andy Berkowski also has an excellent website, explaining why dopamine agonists cause augmentation.
NHS waiting list for Prof. Walker and Prof. Chaudhuri in London are over a year. I think the private list is about 2 to 3 months.
The better informed you are, the better treatment you'll receive.
HRT can make RLS worse. As Joolsg said pramipexole (and ropinirole) are no longer the first-line treatment for RLS. Gabapentin or pregabalin are. Yes you are augmenting and need to come off it. You can start by shaving off a little of your tablet every couple of weeks. 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 as you get near the end you will probably have to wait until you can get an appointment so you can get a low dose opioid temporarily to help you out and so you can get a prescription for gabapentin or pregabalin so you will have something to control your RLS when you are off it. When you are close to your appointment, post back here and we can give you some advice. Or you can print out the appropriate sections from the Mayo Clinic Updated Algorithm on RLS and show it to your doctor and perhaps s/he will be willing to follow it.
Thank you for this information Sue. I've tried gabapentin but didn't get on with it. I am only on a very small dose of pram 88micrograms (0.088mg) so I'm hoping that withdrawal won't be too bad? I have a GP appt soon so will take in the print out as suggested - thanks. Have read up about LDN so will talk to GP about pregabalin & LDN to see what she thinks. Really useful info, thanks so much
I'm not quite sure what you mean by didn't get on with it. Did you mean you had side effects you couldn't live with? And if so did you give them at least a few weeks to go away and become less enough you could live with? If so then You might want to try pregabalin. Although they are 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 . It takes 3 weeks to be effective although it won't be fully effective until you are off pramipexole for several weeks. 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. .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 calcium don't take it within 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin) daily."
I was on 300mg gabapentin for 4 months and had to come off them as I couldn't concentrate at work. I felt really wiped out on them so yes basically it was side effects that didn't suit me. You are suggesting a much lower dose though so presumably that might lesson the side effects so worth another try. Would I have to come off the pramipexol before starting pregabalin/gabapentin?
300 mg of gabapentin is basically a starting dose. There is a 6 to one ratio between gabapentin and pregabalin. 300 gabapentin is equal to 50 mg of pregabalin. No you don't have to come off pramipexole first.
Have you had your ferritin checked? 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 ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. 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. Improving your ferritin is one of the ways to help with your augmentation.
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.
Thanks again Sue for this info. I am on oestrogen (prescribed HRT), Ramipril (prescribed) collagen powder (OTC - Ancient & Brave) and take paracetamol & ibuprofen most days as necessary. Will try some of the other things too that I haven't tried before.
Hi Sam. You poor thing. I finally "found" Professor Walker at the Queen Square Neurology Hospital (only through trawling the internet) ... but as Jools said below, I had to wait a year for an appointment on the NHS (and basically I told him what I was taking (based on what I had learnt here on this site through Jools, Sue and others and through the Mayo Clinic Algorithm) and he basically said "ok". And that was that. I get a follow up phone call with him after six months, but if I want another face to face, I have to wait another year ..... Jools is absolutely right in saying the better informed you are, the better treatment you'll receive. YOU have to tell THEM what you want and why .... amazing really ....
My GP doesn’t take any notice, neither does the neurologist! So I don’t go back to the Neurologist, he wouldn’t give me Gabapentin and my GP who I specifically told I didn’t want Setraline because of RLS has prescribed Sertraline!
So glad I've fond this forum as have lots of notes to take to the GP appt! So glad I have a brilliant GP now who is very interested in RLS and seems to want to learn about it. We shall see! Thanks again all
To be honest Sam I have found this forum far more helpful than any neurologist. My GP now says "what do your forum friends think"!?I too have had RLS for 30+ years and have tried every medicine & cure going. It really is trial & error as each person reacts differently.
At the moment gabapentin and oxycodone is helping me but I think we would all agree that sadly RLS seems to get worse with age.
Sue, Jools & others on this site have helped me enormously.
Unfortunately HRT can be a major RLS trigger. It was for me. And of course augmentation is a horrible thing. It’s not easy to come off of dopamine agonists but with perseverance it can be done and you’ll be happy you did.
I had to go off HRT and stopped taking Naxopren for arthritis. It was a big trigger. Hospital neurologists are able to prescribe Gabapentin or Pregabalin. "Nag" your GP to get a referral to a neurologist. I had to wait 6 months for mine in Sheffield hospital. It was well worth it as he's been able to prescribe those and the follow up is a repeat prescriptions from your GP.
I don’t know of any specialist, unfortunately. It sounds as if you’re definitely augmenting and you will need to come off dopamine agonists. I found HRT made my RLS much worse. The Facebook RLS SUCKS! Is fabulous for information on this condition and has files from Johns Hopkins for info on how to deal with coming off dopamine agonists. It’s mostly people from USA but still worth joining for their super advice.
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