Hello. I am in Canada and I, and my four siblings, have suffered with RLS, most of our lives. I am 68 now and have struggled with RLS since I was in my late 20’s. I have been through it all and done it all including 6 years on pramipexole, augmentation and horrible detox. Gabapentin did not work, nor did codeine very well and as I age the symptoms worsen as is to be expected. My fasting ferritin level is 187. After the codeine, I tried Kratom which worked brilliantly some nights and not so great, others. So I wanted something more reliable. My symptoms are only at night. I saw my, very willing to learn, doctor a week ago and asked her to prescribe methadone. She would have but isn’t licensed to do so. She could however prescribe Buprenorphine/Naloxone tablets and she did. I started four nights ago with .05 mg and have worked up to 2 mg. As of yet, I am not getting the relief I had hoped for. The Mayo Clinic Algorithm suggests the effective dosages at .05-6 mg. I was hoping to stay on the low end of this recommendation but will try upping my dose 1 mg tonight to 3 mg total.
I have thoroughly scoured the information in this wonderful forum and have seen it suggested (Shumbah) that it is preferable to take straight Buprenorphine, without the Naloxone. I understand the Buprenorphine in the tablet is absorbed sublingually under my tongue but the Naloxone portion, in the same tablet, is not and must be swallowed after being dissolved in saliva to be effective. After 10-15 minutes of allowing the tablet to dissolve, I spit the residue out and rinse my mouth with water several times, so I am hoping I am getting rid of the Naloxone by doing so and not absorbing it through my stomach due to not swallowing it. I hope that makes sense!
I am not sure my doctor can prescribe just straight Buprenorphine without the added Naloxone and am hoping someone in the forum can help confirm my thought that I am getting rid of the Naloxone with my method. Shumbah suggests that the leading RLS doctors recommend no Naloxone with the Buprenorphine.
I am hoping as time passes, and my body adjusts, I can find the happy medium for minimum dosage to give relief. Thanks to all. One of my brothers lives in the UK and I have suggested to him he join this forum. Having those who understand this syndrome, and having everyone to turn to, has been such a relief.
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If you've been following this site then you can anticipate my queries!😝
Have you had an iron blood panel. ? What is your serum ferritin number?
Do you take any possible triggering medications ,such as Statins, antidepressants, antihistamines and so on.
Finally ( my favourite !). Keeping a food diary to determine any possible triggers. Alcohol, msg - soups and gravies etc. high salt, preservatives and on and on.🥱
Thank you Madlegs1! Yes, your questions are good! Ferritin is 187. I do not drink alcohol. I take no triggering medications, actually no meds at all. I watch for MSG and preservatives. Extremely active all year, hiking, skiing snowshoeing and paddling so as far as I know, I am in good health for my age. My four siblings and I all have severe RLS and have had for most of our lives so there must be a genetic component.
I don't know about the Naloxone diluting the effect of the buprenorphine? I've read that it may help with otherwise possible stomach-related side effects, along with the fact that it prevents a "high" at higher doses, thus reducing addiction possibilities. I'd certainly suggest trying it without spitting out the residue - you might be losing some of the efect of the buprenorphine? Can/have you tried cannabis (THC, not CBD)? That helps me along with the suboxone.
707twitcher, I have tried cannabis, THC-CBD-CBN with a little relief but not enough. Never in conjunction with the Buprenorphine/Naloxone though, having just started it four days ago. I thought I read somewhere that the Naloxone could possibly hinder the effect of the Buprenorphine. It was suggested to spit it out or get a Buprenorphine prescription without the Naloxone. Tonight I will try consuming everything. Thank you.
The Naloxone helps with opioid induced constipation. And I agree with Twitcher that you may be getting rid of a portion of the buprenorphine too. Be aware that buprenorphine can affect your teeth.
Hi SueJohnson. Yes, I read that Buprenorphine can affect teeth so I do rinse with water after dosing and wait an hour to brush my teeth, per my prescription instructions. I will definitely start consuming the whole dose starting tonight.
Regarding your below comment and very useful suggestions, I have done all those things over these many years. I take no over the counter drugs or other prescription meds besides the Buprenorphine/Naloxone now. My labs show my vitamin levels are correct and ferritin is good at 187. I do not drink coffee or alcohol. I live a pretty clean life and really, none of these efforts touched the RLS I have at night, which is quite severe. Hence wanting to find something I can use for relief, probably for the rest of my life, unless a cure is discovered which seems highly unlikely in my lifetime. I am hoping the Buprenorphine/Naloxone will cover my symptoms once I find the correct dosage. Thank you for your suggestions and help.
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, oestrogen (estrogen) including HRT, 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, 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. Keep a food diary to see if any food make your RLS worse.
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.
The naloxone is just to prevent abuse of the Buprenorphine if injected or snorted . It does not alter the Buprenorphine action. It does help wih the constipation one can get with Bup alone. For RLS it isn’t necessary. I take Bup alone, but only need .5 mg, but everyone is different. I also took Pramipexole for 6 years, but rotated off if ai felt there was even a hint of augmentation or if .25 was not enough.
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