I am new to this site but have found some great information. (especially from Sue :)). I have all the typical symptoms of Augmentation from Ropinirol and am on the maximum dose 4mg (1.5mg at 2pm to try to decrease early onset symptoms and 2.5mg at 7pm)
GP just doesn't have enough knowledge and I would like to find a Consultant to help me wean off of Ropinirole and go onto a different form of medication. My iron levels are low at 4.9 umol/L and GP has place me on iron tablets but ideally I would like a tranfusion
Are there any Consultant recommendations for RLS in the Hertfordshire, Cambridge, Essex or London Areas (London is a pain due to Public Transport but will go there if there if I can be helped} I am fighting this battle of RLS which is ruining my life!
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LondonGir
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With serum iron of 4.9 you need an iron infusion. A specialist will arrange. What's your serum ferritin? That is the key number for RLS.There are very few knowledgeable specialists.
In London there is Professor Guy Leschziner at Guy's Sleep Clinic and Professor Walker at UCL Queen Sq.
However, we do always stress that even 'good' neurologists are still prescribing the Neupro patch in the mistaken belief it doesn't cause augmentation. It does.
There is a withdrawal schedule and an iron therapy page on RLS-UK website under 'useful resources'.
You could start the withdrawal process now. Switch to normal release Ropinirole in a mixture of 2mg, 1mg and 4 x 0.25mg pills and Reduce by 0.25mg every 2 weeks.
Ask your GP for a low dose opioid to settle the severe Withdrawals at each dose reduction. Take the opioid at night for 3 or 4 nights. If GP refuses you can buy solpadeine Max from chemist. They contain a small dose of codeine.
The GP should be able to deal with this, but probably has had no teaching on the subject.
The specialist will probably prescribe gabapentin or pregabalin but you start those around 4 weeks before you drop the last 0.25mg Ropinirole.
I cannot believe that I have am learning and understating more in the last 24 hours than in the last 15 years,. Thank you all so very much. I took 1.5 mg of Ropinirole at 2pm yesterday to alleviate day time twitches that seemed to work, although made me very tired by 6pm and then took 2mg at 7pm and twitching, and walking around the house like a mad women, was reduced
I have tried to reduce ropinirole (6months ago when I was only on 2mg a day) but symptoms during the day become unbearable and GP answer was to increase dosage but today I have received a private GP referral and will see if my Helath Care provider will allow me to see the consultants you mention above - *THANK YOU SO MUCH**
UK doctors aren't taught anything so are completely in the dark about augmentation and how it works. Or how to get you off the poison.
Many of us are completely RLS free - day or night- on different meds.
Many do well on pregabalin or gabapentin. Many find they just dont work after years on DAs. For those, opioids are needed.
But getting them in the UK is a minefield depending on where you live.
But start the process now. Go slowly.
The few private consultants cost between 250 - £350 for the initial consultation. They will then write to your GP to suggest either gabapentinoids or opioids.
Due to long waiting lists you will have to pay for private a private consultation.
Prof Matthew Walker, Neurological Sleep Disorders Queens Square in London or Dr. Guy Leschziner at Sleep Disorders team, Guy's Hospital in London or Dr Novraj Dhanjal National Hospital for Neurology and Neurosurgery in London.
Dr. Andrew Klein at the Nuffield Health, Cambridge Hospital - runs the Cambridge Iron Clinic- does private iron infusions for RLS for around £800. Dr Mathew Walker will also prescribe an iron infusion
I now have a referral for Dr Matthew Walker , just waiting for the appointment to come through. Thank you both (Sue and Joolsg) for all you information and rls-uk.org website links
I had my first appointment with Professor Guy Leschziner at OneWelbeck last week. The initial fee was £300, and I managed to get in to see him relatively quickly. He is helping me get off of Ropinerole (with a prescription for Gabapentin, followed by Pregabalin if that doesn't do the trick, followed by opioids, if these two anit-seizure drugs don't work).
I must say it was good to consult with someone who understood my condition and listened to my concerns. He is also writing to my GP explaining why the antidepressants they prescribed for me (Mirtazapine) are totally not indicated due to my RLS (it was pretty much impossible for me to convince them of this myself - which I know will be a common story for many here).
I am very much looking forward to coming off Ropinerole, and remain hopeful that I will find my way towards managing this condition in a way that is not so deleterious to my brain health (and my lymphatic system - the Ropinerole has made me very swollen, which is a side effect I can really do without!).
I shall keep you posted!
Best wishes. I'm on this journey with you, and am sending you the very best,
Thank you Sue! This forum has been such a help and I am eternally grateful for all of you going above and beyond to help those of us struggling with this issue. Jane x
I would be interested in following your journey off Ropinirole, as I am yet to start. Did you stop Ropinirole cold turkey or weaning down on dosage as per guidelines on this forum?
My referral was only on Friday and is with Dr Matthew Walker (also private) and I am awaiting an appointment date. I saw a recommendation on a previous Health Unlocked post of splitting the Ropinirole dosage which I am trying and it seems to alleviate the early afternoon onset of symptoms (1.5mg at 1pm and then 2mg at 7pm)
I have come off of the 4mg daily dose and will follow guidelines and every 2 weeks come down by 0.25mg total) Also I contacted GP regarding my low iron levels but yet to hear back!
I have yet to receive my prescription for Gabapentin, so will be following the advised protocol as soon as I get it:
"Gabapentin should be initiated at 300 mg at night, increasing every week by 300 mg until she is on 900 mg at night. If this has significantly improved her sleep and her RLS symptoms, then the ropinirole should be gradually reduced by 0.25 mg every two to three weeks. If the gabapentin is insufficient, then she should be switched to pregabalin. A rapid cross taper can be undertaken replacing 300 mg of gabapentin with 100 mg of pregabalin every five days so that she is on pregabalin 300 mg at night after a couple of weeks"
As regards coming of the Ropinerole, yes, I'll be doing the same as you - decreasing by .25 mg every 2 to 3 weeks. However, I have read somewhere that there is an argument for coming of Ropinerole over a 2-3 week period. It's not a great experience either way, so I think the wisdom in the faster approach is just to get it done and dusted. I wouldn't attempt to come off it cold-turkey as it were. I have accidently done exactly this when I've run out of Ropinerole and had to do without it over the course of a long weekend. It was pure hell and I was totally shocked by how RLS took over my entire body. I didn't sleep for 3 nights. So - I wouldn't want to repeat that experience!
Best of luck with it! I shall report back and let you know how I'm getting on when I start (hopefully this week)
Welcome to the forum. You will find lots of help, support and understanding here.
Have you seen my detailed answer on how to reduce the ropinirole and start gabapentin or pregabalin? If not, glad to give it to you here.
Same with my list of things that help or hurt.
Your ferritin is unbelievably low - in fact the lowest I have seen. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Obviously you need an iron infusion. Until you get one you can start taking iron.
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.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
I am not finding my GP terrible helpful and have a non urgent appointment for 3rd December to discuss RLS again. I had a private blood test which showed iron of 4.9umol and went to pharmacy for iron tablets which are Ferrous Sulphate 200mg - I have taken two in the last four days. I have learnt more from your blogs than from my own research of from my Doctor who has very little information other than to advise to increase dosage
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, low potassium. 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.
To expand on Joolsg's reply on getting off the ropinirole this is my usual advice which repeats some of the things she said:
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.
To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. 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, Neupro 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. (Pregabalin is more expensive than gabapentin in the US.) 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 ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole 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...
Saw Dr Matthew Walker (Consultant Neurologist) in London today and my journey off Ropinirole begins and transition, temporarily it seems, to Pregabalin. Plan is to offset early symptoms in the afternoon I will be taking 0.5mg of Ropinirole around 2pm (early if symptoms come on). In the PM - 2mg of Ropinirole and 50mg of Pregabalin. Then 2 weeks later 1.5mg RoP and 100mg of Preg. Then 2 weeks later 1mg of Rop and 150mg of Preg, keep going until I am down to 0mg Ropinirole and 250mg of Pregabalin. If symptoms are unbearable then slow down the journey in 0.25 mg each transition. Then another review with Dr Walker. On his suggestion, I am also adding Magnesium Citrate 2 x 200mg every evening. And because I am soon to travel by plane and cannot sit in the seat for long he suggested 2 x Co-Codamol before flying. (I an going to test this out to hopefully be able to sit in a Restaurant for Christmas dinner) - He was terrible nice and I was very happy with him as my consultant, so thank you so much Sue for the suggestion as I now have a plan! He also took my bloods for the iron tests you suggested. (My GP just wanted me to increase Ropinirole again to 4mg!!!)
That's great that your visit went well and you are pleased with him!
That is an aggressive reduction schedule. .25 mg which I suggested is also what RLS-UK suggests. But you may be lucky and it may be alright but as Dr. Walker says if symptoms are unbearable then slow down the journey to 0.25 mg each transition. For some even that is too much.
Also you may not need 250 mg pregabalin as the Mayo Clinic says the average effective dose is 200 to 300 mg so my advice would be to stay on 200 until your withdrawal symptoms from being off ropinirole settle and then increase if necessary.
Good luck on your plane trip and your Christmas dinner!
Thank you for all your help and excellent advice, not sure where I would be without this forum. Yes, I will take on your suggestion and stay on 200mg pregabalin (when I get there!)
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