Hi all,
I've seen many of you say that your Buprenorphine (Bupr) dose is tiny, as small as 0.2 mcg to 0.4 mcg. I happened to be reading about the use of Bupr for pain relief and saw that the only two doses available in the U.S. for any uses are 2 mg tabs and 8 mg tabs. For those of you on a microgram dose, where do you get it and is it necessary to pulverize a 2 mg tablet and take just a fraction of the powder based on a guess? thanks
This is run by RLS-UK- a UK charity.Here in the UK (& Europe) Buprenorphine pills come in 0.2mg.
So we start low.
In the USA, where everything is bigger- 2mg is the smallest pill.
That's why so many use the Buccal film. It's easier to cut into smaller dose strips.
Okay. Thanks much for that explanation. I hope that low dose means you all have far less of a problem with insomnia than I do.
I think insomnia is a common side effect, irrespective of dose.You either get insomnia or sleepiness.
I have never had insomnia but know from others on here that it is debilitating.
Claire_c only takes 0.2mg ( a tiny dose) but she experiences insomnia.
I can only suggest you try Ashwaganda pills ( they're supposed to help insomnia) or medical cannabis.
I've tried cannabis but found no success. Cannabis is legal where I am so we can buy as much as we want in any type of preparation whether THC alone or with CBD and may other combo's. The trouble with this stuff in my opinion is the outrageously high cost. And you need to try several different preparations to find one that works for you. I held the line at $500 US and will never spend another dollar on that stuff. But I will try ashwagandha. Thanks for the tip.
You can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it.
You slipped a digit in the mg to mcg conversion. People here are using doses as low as .2mg (not .2mcg). But, yes, it would still be a pain to cut a pill into tenths. I think the most common Rx in the US is Suboxone 2mg strips (with .5mg of Naloxone also included). I use these. Cutting a thin strip into fractions (with a razor blade) is much easier than a pill.
A logical starting point for your first dosage is probably .5mg = 1/4 of a strip. The great thing about buprenorphine is that it acts quickly. If it doesn't completely settle your RLS symptoms within 30 minutes or so, you can take a little more. If it handles them completely, you might then try scaling down from the .5mg for the next dose. Definitely keep a log of your dosage by day. And record any side effects so you can monitor. Some might show up for the first week or two, then subside. Others are likely to remain indefinitely, so you may need to find remedies for them. e.g., constipation may require taking prunes or fiber daily; insomnia may require experimenting with gabapentin, cannabis, magnesium, etc.
Also be patient in finding the optimal dose. We all try to get by with the lowest dose possible in order to minimise side effects. But while the sublinguals act quickly, it may take a couple weeks for your body to adjust to buprenorphine as you find your best dose and timing.
I've been taking Buprenorphine for 2 years sublingual. I take maximum 1G But mostly 0.8mcg
Most days my RLS awakens me at 0.6.30. Frequently I get RLS through the day. I can walk it off but that is not always possible. Can you suggest anything ?
You may be a good candidate for the buprenorphine patch. Rxs may be tougher to get (higher cost), and you’ll have to experiment with dosage and figuring out whether the patch will last you 5 days or 6 days (almost nobody gets the “advertised” 7 days). But the 24/7 coverage sounds like what you need.
You would likely need the 20mcg/hour patch - that is roughly equivalent to 1.2 mg of sublinguals. 15 mcg might be better, but that maybe harder to find. You’ll definitely want to retain access to sublinguals so you can “top off” your dosage when needed.
Many people here take their sublinguals in split doses. You could experiment with that. It would likely result in your taking more than you currently are. So your side effects, if you’re bothered by them, will get worse. I know Joolsg splits her dose - some at 9pm and some at midnight (if I remember correctly). That may solve your 6am issue.
Good luck!
Thankyou 707twitcherI did have 20mcg/hour patches first several years ago. I suffered with dreadful depression . Dr Buchfuhrer advised to switch to sublingual tablets and Pregabalin to offset the depression. I did that and had iron transfusions and no further depression. Less coverage though. I do find I'm taking Paracetamol most days to keep my legsstill during the night when I've reached my max with Buprenorphine.
I'll try splitting them.
Thankyou
Interesting that the patch caused depression for you, but not sublinguals. I stopped the patch because I thought it was causing fatigue, whereas sublinguals didn’t. Why do you say “when I’ve reached my max with buprenorphine “? Mayo says the max is 6mg. I would think a little more buprenorphine is better than adding paracetamol? Is doctor Buchfurher saying don’t go over 1mg? That doesn’t sound right.
Not Dr Buchfuhrer but my GP. I went up from 800mcg to 1000mg with extreme reluctance from gp to prescribe. I was warned about addiction etc. I am not prone to addiction and never been on any other med prior to this except for Pramiprexole for 20 years at a very high dose. I Augmented. I was mis managed and taken off the very high dose 'cold turkey'. Then several trials of other types of med until present day.
There are lots of studies showing buprenorphine (and opioids in general) in the low doses used for RLS are extremely unlikely to cause addiction. Joolsg has posted links to them often. Use the search bar above and look for opioid addiction or terms similar to that. Most of us will be dependent on medications for RLS, because without them we wouldn’t survive. Just like diabetics are dependent on insulin. Dependence is not the same as addiction. If you can’t find some of the links that provide info to show to your GP, post back and I’ll dig them up for you. It sounds like your GP is too stubborn to read up on RLS. If you aren’t dealing with Dr B anymore, I’d look for a different GP.
No, I'm not with Dr. B. any longer because his health has gone south on him and he may be closing down his practice. But my new PCP has taken over the Bupr prescription for now. I sure hope it works out in the long run. There are many things that can go wrong with primary care docs in my area leaving for greener pastures and the new doc wants to change everything. We shall see.
Yes, I am aware that Bupr and opioids such as narcotic pain meds are unlikely to cause addiction. I've read that if one takes narcotic pain med strictly for pain then they won't become addicted. They probably mean won't become physically addicted but I'm sure we I will or already am psychologically addicted to being RLS free.
Hi, there. I just happened to see your mention of Dr. B. I flew to CA to see him 2 years ago, I think it was. I recently had an issue and wrote to him-he did respond but just said I had to have an appt.
What has happened with his health?
Did you mean to write 1 mg rather than 1 g?
Ahhh, so there are strips. I was told there are only patches and sublingual tablets. So, I have to assume that everyone on less than 1 mg Bupr is using strips for ease of dividing into the preferred dose. My best dose is actually 7 mg but I do either 6 or 8 mg because cutting a 2 mg tab often ends up making several unequal size pieces or turns half into powder which I invariably sneeze on to make it disappear. So, 6 or 8 mg whole tabs it is. And yes, insomnia is terrible. I take the dose early morning so that I can get to sleep by 0300. Good thing I'm retired.
What have you tried for insomnia? Some people here say magnesium helps. Some say a little pregabalin or gabapentin helps. I can’t say either does anything for me, but mayoId be even worse without them…
Cannabis can help too, if you’re interested in that. It helps me.
In UK and Europe, the Buprenorphine pills start at 0.2mg. A tenth of the lowest dose USA pill.Maybe if you all campaign, the drug companies will start making the lowet dose pills.
Well I need 6 mg at bare minimum. Other U.S. patients I've spoken to are on 1 mg to 8 mg. We have the 2 mg and 8 mg sublingual tabs available plus the patch. I intend to inquire about Bupr strips. Also, there are a rather large number of liquid Bupr preps available for injection I guess. It's primary use here is to help people wean off hard street drugs. So I suspect the latter dosages are for those folks, at least initially and until they are able to tolerate oral dosages. I'm guessing though about what they get.
That's a large dose. I'm sure I would have needed a higher dose if I'd taken Buprenorphine shortly after Ropinirole withdrawal. I think I managed on a lower dose because I started it 5 years after Ropinirole. I took Oxycontin and pregabalin for 5 years and still had very severe RLS (38/40).
But this forum shows that we all respond/react differently to the limited meds available to us.
The few times I've had narcotic pain meds are when I realized there was a solution out there. Demerol, Dilaudid, etc all stopped my RLS completely. But I could never get a regular Rx for such medicine. After my turn with all the standard meds and fsilure after fsure I found Kratom. Worked like a charm for about a year. At that point I was making a paste and needed 2/3 cup of the stuff to get the same effect I'd had from only 1 teaspoon at tbe start. That's when I started searching worldwide for a doctor brave enough to write me a Demerol Rx. That's when someone here turned me on to buprenorphine. It was a long fight to get it snd has been a 7 yr fight to keep it coming. I needed 12 mg initially to stop RLS in all body parts. Once my serum Bupr level was high enough we were able to titrate downward. Leveling off at 8 mg but 6 mg will work if I do that dose every other day. And I'm assuming that's because I had use large amounts of Kratom for so long. I still kerp a bag full around for those times when I can't get the Bupr Rx filled in time. Oftentimes the pharmacy is out of Bupr.
I agree. I suspect that you needed such a high dose of Buprenorphine to 'get you off' kratom and cover the increased RLS.I always caution against kratom as an ongoing therapy because nearly everyone reports that they develop tolerance quite quickly.
It's illegal here in the UK since 2018 but we can buy it from the Netherlands.
I only ever suggest it to people struggling to get off dopamine agonists and advise them to use it sparingly for short periods.
But we are treated so appallingly by doctors that we will try anything to get relief.
Absolutely - most docs don't know anything about RLS even though there are numerous books out there on the disease/syndrome. Kratom can be a life saver when you have nowhere else to turn and you're life is stuck at home. You require groceries to be delievered and you must pay for rides to appointments. There is no going out with friends, no nothing but suffering at home without sleep for weeks on end which turn into months then years. Some of us have lost 40 years to this nasty disease. We'll try anything! However, I agree with your approach regarding the advice you give to others about Kratom. It's definitely not a long term solution and that's what we all want.
I am taking buprenorphine 10mg patch which releases 10mcg an hour. At night I take a 200mcg sublingual pill called Temgesic. I am also taking for cancer pain but it works well for my RLS. The pill is available also in 400 mcg sublingual. I live in Australia.
Ohhh, so you have two sources of buprenorphine. I don't think Temgesic is available in the U.S. but now I'm intrigued. I'll look into it more. So glad it's helping with your pain. If only it could work for everyone's pain.
I think the mcg should be mg. The average dose for RLS is .5 mg to 1.2 mg. I’m on US and cut a 2 mg tablets into quarters. It’s a little difficult to say how accurate the cuts are even with a pill cutter and the tendency for them to crumble. You get get a jeers scale to weigh it out.
Yes I am on the low dose buprenorphine sublingual SF 200 mcg (0.2)Plus 300mg of gabapentin.
The low dose has worked a treat for over a year now but I am in the UK.
So, there is a 0.2 mg tablet over there?
On my packet it saysTephine 200 microgram sublingual tablets (buprenorphine SF 200 mcg).
Make of that what you will!
I think Jules said that is the same as 0.2mg?
It is. 1 mg (milligram) equals 1000 mcg (microgram).
Hence 0.2 mg = 200 mcg.
In the UK.
one of those hard nut cases with severe RLS and I had to start out 2nd than at 6 mg and within two months I topped out at the 8 mg now that’s the highest dose Dr. B said I could go to , that has worked well for almost 4 years now hopefully that will continue. I have occasionally split my tablet in half trying to lower it hopefully and see if that will be enough you just never know with RLS.❤️🩹
I am in the United States. I take a sublingual film buprenorphine and naloxone 2mg/.05(not .2mg) and have been prescribed 2 film per day. I usually take one film and then cut the second according to my pain level. If I take 2 full films at a time, I get nausea.
You take buprenorphine for pain? My current Bupr dose is either 6 mg or 8 mg depending on how I feel that day. It completely stops my RLS and I had it in my feet, legs, arms and face. But it does absolutely nothing for any kind of pain. It doesn't even help with moderate to slight pains.
I usually call my RLS - pain! As that is what it is to me. I think some people feel it is something else. It allows me to sleep 6 to 8 hours a night.
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