Hi, I finally had an appointment with a neurologist at the local hospital. He listened for over an hour and is very open to prescribing Buprenorphine after I told him about the positive experiences most here have experienced. He admits that he doesn’t have any experience with prescribing it and needs to research. Specifically the dosing. Does anyone have a link I can send him?
I’m actually in shock this dr is listening to me and willing to prescribe buprenorphine. Otherwise he’s open to opioids which I’ve taken before. Thank you.
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e365
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The Mayo Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... says for Buprenorphine hydrochloride/naloxone (sublingual film or tablet) as 0.5-1 mg starting dose and 0.5-6 mg as the usual effective dose for RLS.
The naloxone is not necessary but helps avoid constipation.
Most of the doctors I have in the UK are like Dr Fackrell that you saw who will advise your GP. Use sources like the Mayo Algorithm, Dr Winkelman's study, and the sources at the right side of this page "Opioids for RLS - some useful information.
If you have those doctors on a list like a PDF could you please send them to me cuz every doctor I go to refuses to prescribe any form of opiates and I am suffering thank you.
Cleveland Clinic although refuse DAs if they suggest. Gabapentin/pregabalin are OK. They will prescribe buprenorphine and methadone if others don't work.
Welcome to the forum. You will find lots of help, support and understanding here.
Since you don't list anything on your profile, I don't know whether you have tried gabapentin or pregabalin or if you did whether you took enough or in the right way. They are the preferred first medicines to try and opioids are usually reserved for if they don't work or one has side effects they can't live with as opioids definitely have side effects and one can never be guaranteed that a doctor will continue to prescribe them with the opioid crisis. Also there is the stigma effect for friends and family who may not understand that you won't get addicted taking it for RLS. So I will give my usual advice as though you were a new patient.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 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. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. 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 to 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason (not sure about 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 at Https://mayoclinicproceedings.org/a...
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, 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.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
By the way it would really help us to give you advice if you would indicate on your profile your gender.
There is really only the Mayo Clinic Algorithm which sets out max dose. But in USA they can ONLY get 2mg pills so starting doses will inevitably be higher than in the UK.Many of us here in the UK start on 0.2mg and the average dose seems to be around 0.4 -0.6mg.
Start low and increase by 0.2mg as necessary.
Common starting side effects are nausea ( take zofran or medical cannabis) , constipation ( take magnesium citrate & green veg), panic attacks & sweats ( take low dose pregabalin) and opioid alerting/wakefulness ( try pregabalin or trazodone to sedate).
I’m in Sweden and currently on 300 mg pregabalin which has bad side effects for me personally. I was on OxyContin for two years which didn’t have too many bad side effects except I did need to keep upping the dose finally stopping at 30 mg and that didn’t stop my pain sometimes. The dr isn’t opposed to prescribing it again but I’d like to try buprenorphine before I go back to oxy. Thanks so much for the link and your answer. You and Sue are invaluable! Best
Once you find out the buprenorphine contains your symptoms and you can live with the side effects you can come off the pregabalin or reduce it to the 25 mg pregabalin Joolsg finds helps with some of the side effects. I gave you this information but it was awhile ago so will give it to you again - reduce by 25 mg pregabalin every couple of weeks. If you do so you will have very few or no withdrawal effects. If you do have any, slow down even further, In very very rare cases you still might have withdrawal effects.
Thanks, I remember how to reduce the pregabalin and I’ve gotten the same advice from my doctors here. Just worried how I’ll react in the beginning with pregabalin AND buprenorphine in my system. Will be quite the cocktail.
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