Hi I am 73 yo and was diagnosed with RLS in 2017, although I believe I was experiencing symptons 2-3 years earlier. I was prescribed Sifrol in 2019. I am starting to wean myself off it with the help of Dr David Cunnington (originally from Melbourne, but now in Qld I believe) via telehealth appointments. I am a member of the US RLS Foundation and am aware of the Mayo Clinic paper on RLS augmentation etc. It took a long time to get a proper diagnosis (my GP admits she has scant knowledge of RLS). My initial Neurologist Dr Arun Aggarwall in Sydney, actually specialises in Parkinsons and kept telling me I could increase my dose of Sifrol, which, after reading the Mayo Clinic paper, I knew was not wise. He was not open to patient input, so I changed to seeing Dr Cunnington. So far, so good. Having said that, the onset of my RLS symptoms have been occurring earlier, during the afternoon and early evening. I have made an appointment with Dr Cunnington in late January to further discuss. I am currently on .75mg of Sifrol and 300mg of Gabapentin.
Introduction : Hi I am 73 yo and was... - Restless Legs Syn...
Introduction
Unfortunately you are already suffering from augmentation.
You know what to do!
Get off the sifrol, very slowly and by very small amounts.
Sue Johnson covers it all in her replies to people in the same plight.
All the best.
Have you had your serum ferritin checked-- if not , do get a test.
Hopefully Dr Cunningham will prescribe a low dose opioid to settle the withdrawals as you reduce Sifrol further.Keep going. You've done really well to get down to 0.75mg ( which is still way above the max. dose).
The 300mg gabapentin won't do much until around 4 weeks after the last dose of Sifrol.
Withdrawal is hellish but the daytime symptoms usually disappear once you're through withdrawal.
Thank you for the advice. How do I access Sue Johnson's posts? Is she a RLS specialist?
I'll reply to you after I have my coffee.
Actually- yes she is! She's not a doctor, but, like many people on this site she knows far more than the majority of trained GPs and neurologists.RLS isn't taught in the UK at medical school, during GP training or during neurologist training. So there are only around 4 doctors in the whole UK who have some knowledge of RLS and the latest research and treatment guidelines issued by the top RLS experts (most are in the USA).
Just click on SueJohnson profile picture. That takes you to a page with headings 'posts' and 'replies'. Click on Replies and you'll see all SueJohnson advice for getting off Sifrol and starting to increase gabapentin. Most doctors prescribe gabapentin incorrectly. They prescribe ot 3 times a day. It's only needed at night for RLS for the overwhelming majority. And it cannot be absorbed well above 600mg so doses should be split 2 hours apart.
Welcome to the forum. You will find lots of help, support and understanding here.
Dr Cunnington is excellent so you are in good hands. Since you are aware of the Mayo algorithm you probably know most of what I can tell you.
You are on 1 and a half times the maximum sifrol which is .5
First off check if you are on the slow release sifrol. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular sifrol because the slow releases ones can't be cut if needed.
To come off sifrol reduce by half of a .125 tablet 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. 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, beginning dose is usually 300 mg gabapentin Normally you would start it 3 weeks before you are off sifrol although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg 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. 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 ."
If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason.
Have you had your ferritin checked? If so what was it? 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. 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.
Meanwhile 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, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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.
By the way it would really help us to give you advice if you would indicate your gender on your profile and any other health conditions you have.
Thank you very much Sue for this comprehensive reply and all your suggestions. I will update my profile with more information on my other health conditions.
What are you taking for your cholesterol and some medicines can make RLS worse and I can give you safe substitutes.
Rozuset Composite Pack: Ezetimibe 10mg; Rosuvastatin 5mg
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 which is part of the pack but can be prescribed separately - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS and then there is Triglide 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.
My specialist's name is Dr David Cunnington, not Cunningham.
Yes I knew that as I have his name on my list of good doctors. I must have copied it from Joolsg's reply.
And Joolsg is too! In fact she knows more than I do especially about opioids and the UK (I am in the US)
Telehealth appt. made with Dr. Berkowitz finally
Amlodipine?
Medication advice.
Hi from Australia 🦘 
