I am now taking two 0.4 buprenorphine tablets each night, however whilst I can sleep for about four hours - which feels like a miracle in comparison to what was happening before - and then after a short walk around another two hours… I then have quite severe restless legs and find it difficult to sleep any more. It feels like I need more! I wondered what doses other people are on - I know Jules takes 0.4 in two doses but that definitely is not enough for me.
Also what is the guidance about protecting your teeth? I try to brush them after I have put in my last tablet but if I’m really ready to pass out I might forget.
Thanks for any comments - Dawn
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Drls
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Average dose is between 1.2mg and 2mg, max 6mg so there's room to increase.Buprenorphine causes very dry mouth so buy products for Sjogrens/dry mouth. There are pastilles, toothpaste and mouth gargles and sprays. Chewing sugar free gum will also increase saliva.
I’ve been on 0.6 for 2.5 months now, so it’s a lower dose than yours and correspondingly higher than Jools ‘. But as with all meds tolerances will vary. As Sue says, you’re still comfortably within the MayoClinic guidelines and you have some upwards leeway yet. If you’ve found a doc who’ll allow you 0.8 - and that’s an eye-opener - maybe a further 0.2 won’t have them pressing the panic button! Buprenorphine is something of a gold standard within the fraught area of RLS/PLMD treatments so a further titration is with the effort. Good luck!
Hi Dick - it’s Prof Walker who has given me the bruprenorphine and has said I can take two 0.4 tablets…. I ve yet to go back to my dr to see if he will prescribe… I suspect he won’t. I’ve been trying to get the meds working as best as possible before I go and make my case to him. I think next week is when I’ll have to do this - I'll be running out soon! I haven’t got another appointment with prof Walker until November (which I do realise I’m privileged to have ) and he said he would have issues prescribing buprenorphine long term if my gp refused so we will have to see what happens.
It just varies so much from surgery to surgery. Some doctors struggle between their duty of care to their patients and a largely idiotic terror of litigation if ‘something should go wrong’, i.e. your becoming a ravening drug addict. Mine were reluctant to prescribe Buprenorphine (which is, of course, off licence for RLS/PLMD) at 0.2 mg for the above reason. I pointed out that a fruit fly would be unfortunate to develop addiction at that dosage but he still wouldn’t shift. Nor would he read in my presence either the MayoClinic dosage parameters or the Manhattan General Hospital findings on opioids for RLS which I’d sent him earlier, declaring that until NICE issued guidelines on off-licence opioids his hands were tied. Fortunately, my sleep clinic doctor came to my aid and - having read the same documents - ratified my request for Buprenorphine tablets at 0.4 mg and subsequently 0.6 and the surgery complied. So unless you’re dealing with a GP even more obdurate than mine, Professor Walker’s thumb-up should suffice. Good luck - let us know!
Another possibility is to split the dose. Take 0.4mg around 2 hours before bed and 0.4mg as you're falling asleep. If that doesn't work, try 0.4mg 2 hours before sleep and 0.4mg when you're woken up with RLS. Or even cut the 0.4mg in 2 and take 0.2mg at 9pm. 0.4mg just before bed and 0.2mg if you're woken with RLS. Basically, play around with doses and timing to see if you can stop the breakthrough and get cover for the whole night.If it doesn't help within a week, you can then ask for an increase. Increase slowly by 0.2mg ( you can use a pill cutter on most brands except Morningside) until you get 24 hour cover.
I used to get RLS around 8pm in the evening but as soon as I split my dose, taking 0.2.g at 10pm and 0.2.g just before sleep, it stopped breakthrough RLS the next early evening.
The Massachussetts Opioid study confirms it's usual to have an upwards adjustment on dose during the first year.
Hi Dris. With regard to protecting your teeth, hear at some thoughts from my experience. I use buprenorphine (lowest dosage in the US seems to be 2mg sublingual tablets, and I do my best to split them) and have been very concerned about the teeth health issue. I do several things to combat that.
First, I try to keep the sublingual tablet under my tongue and away from my teeth as much as possible.
Second, once the tablet is dissolved, I rinse my mouth with baking soda water. I use one round teaspoon of baking soda to a big glass of water, although I don’t think the dosage there is so important. It’s just to make the ph of the water very alkaline, and thus make my mouth environment alkaline.
Third, I follow the baking soda rinse with a mouthwash called CloSys, which my dentist recommended.
Finally, I have tooth trays that fit my teeth for overnight use, and I fill them with a substance called MI Paste which is supposed to strengthen and even (I hope) regrow tooth enamel. I have a problem with my enamel wearing off anyway, so I need this regardless. But I imagine that it also helps counteract any acidic action of the buprenorphine.
At my last dental check-up a week ago, my dentist noted that my enamel was stronger than it had been and he encouraged me to keep doing whatever I have been doing, so something seems to be working!
Hi Drls - Douggs advice sounds very good. Some additional thoughts / things that I do: 1) I read recently that you shouldn't rinse your mouth too thoroughly after brushing teeth because then the fluoride in the tooth paste can't do its protective thing. So I'm trying to do that even though I'd rather get rid of it all 2) Dentists say (at least where I live) that you shouldn't actually brush your teeth right after eating apples/acidic things, because the acid destabilizes the enamel and the brush can damage it easier. You should wait 30min at least. So I guess that goes for Buprenorphine too. The baking soda Dougg suggests might shorten this interval by counteracting the acidic action. 3) I use a fluoride containig mouthwash in the mornings. Because they all contain tons of saccharine and I dislike that I try to restrict it to my lower front teeth and I do rinse a bit afterwards. 4) There is a special extra-strength fluoride gel, to be used once a week only, like a tooth paste. I use that too.
The official advice seems to be rinse your mouth with water after the dose, maybe soda water is better. It is the acidity that is the issue. Then brush teeth 1 hr later. To have a dental RV at the start of taking and then regularly while on it. MI paste sounds good too.
I just started taking 2 mg sublingual about an hour before bed. in the past month. It has worked really well, and I have been able to withdraw the Pramipexole fairly rapidly without issue( started at .25, now down to a quarter of that in one month. Will stop next week) It does cause quite significant dry mouth, so a dry mouth rinse, sugar free gum and lip balm is a must- I do the baking soda rinse after the tablet dissolves., and brush an hour later before bed. My dentist recommended the MI paste to keep that enamel strong. I'm adding that too
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