Buprenorphine for RLS

[Graceman]

anyone using Buprenorphine for

RLS? Please share your results.

[Joolsg]

I started sublingual 0.4mg Buprenorphine in June 2021. It has been life saving, literally.

It stopped ALL my RLS from the first night. I went from a IRLS score of 38/40 on 150mg pregabalin and 25mg Oxycontin to 0/40 overnight.

The ONLY time I get RLS symptoms now is if my preferred brand, ACCORD, is out of stock. On ACCORD I never get any symptoms.

Here in the UK we can get much lower dose pills than you can get in the USA. The lowest dose there is 2mg. In Europe and UK the lowest dose pill is 0.2mg.

Start low by cutting a 2mg pill in quarter.

The common side effects of Nausea, constipation, sweats, insomnia & anxiety can be dealt with by adding a small dose of another med for a short time. And they do settle over a few months.

[4Curiousosity in reply to Joolsg]

I have had the same great success. However, it can be difficult to break the 2 mg pills down small enough. Please share what you do for the constipation. That is my only issue.

[Joolsg in reply to 4Curiousosity]

I am lucky that I rarely suffer constipation. Probably because I eat cauliflower every night, chia seeds with breakfast and I take 2 x magnesium citrate pills at night. Magnesium pills are excellent for constipation.

If they don't help try lactulose.

[SueJohnson in reply to 4Curiousosity]

you can get an inexpensive jewelry scale on Amazon for around $11 that measures down to .01 gram and shave off a bit of the tablet and measure it.

[Claire_lc]

I’ve had exactly the same experience as Joolsg . It’s been totally life changing.

[Huntingleroy]

Brilliant drug , worked from day 2. I like Jools take 0.4 sl tablet . There are side effects for me but having no Rls is worth every one

[ID158]

I've only just started Belbuca, which is the buccal film-form (cheek) version of buprenorphine. At this point I'm using between 150mcg (a single film) and 225mcg (1.5 films) a night.

It hasn't even been a week, but 150mcg, while helpful, wasn't knocking it out 100%. I bumped it up to 225mcg after checking with the doctor, and that helped a lot the first night, but not the second night. (I'm also taking 225mg pregabalin, but I suspect that's not doing much but making me gain weight; the plan is to wean off of that if the Belbuca does the trick.)

I was going to make a separate post about this, but maybe Jools could chime in here: Even 225mcg sounds like a very low dose compared to what you're taking--IF it's an apples-to-apples comparison between the buccal version of buprenorphine and the sublingual version. By which I mean, I'm taking 225mcg, and you're taking 400mcg. It's just a delivery mechanism, so I can make that comparison, right?

I'm in the U.S. and will probably try the sublingual pill next. Belbuca is very expensive (there's no generic for it), even when using the Belbuca copay card (which is available on their web site and brings the price down quite a bit). My doctor wanted me to try the patch first, but that's 24/7, and I only need it at night, so I convinced him to prescribe Belbuca instead. I should be able to convince him to prescribe the 2mg sublinguals next.

[Joolsg in reply to ID158]

225mcg is extremely low. I tried 0.2mg pill and it just didn't cover the RLS 24/7. So I added another 0.2mg.I find that I get the best cover by taking 0.2mg at 9pm and 0.2mg at midnight.

I understand that cost is a major factor in the USA.

Hopefully one day the USA will start manufacturing smaller dose buprenorphine sub lingual pills as more RLS patients are switched to it.

You will need a good pill cutter to split the 2mg into 4 x 0.5mg pieces.

[ID158 in reply to Joolsg]

Thanks very much. The cost won't be an issue if I switch to the 2mg sublinguals. I should be able to get more than a year's worth for around $50 if I'm doing the math right. But, yes, I have to think a good pill cutter will be very important.

[707twitcher in reply to ID158]

I would advise getting the suboxone strips rather than sublingual pills. Both come in 2mg dose, but the strips are much easier to cut into small doses. I sometimes use as little as .2mg, or 1/10th of a 2mg strip. I don't think they are any more expensive in US than the pills. I pay $15 after Medicare & insurance for 15 strips.

[ID158 in reply to 707twitcher]

Thanks. I don't think my doctor wants to got that route because of the naloxone component, but I'll bring it up with him again.

[707twitcher in reply to ID158]

I don't know why your doctor would be concerned about the naloxone? It is extremely low dose, and it serves to make the Suboxone harder to abuse because it counteracts higher doses of opioids. This makes most doctors prefer it to buprenorphine without naloxone. The only interaction that I'm aware of is don't take LDN (low-dose Naltrexone) when you are taking naloxone. Some people here say the naloxone helps with sleep, although I haven't found that to be the case.

[ID158 in reply to 707twitcher]

He may not be all that familiar with it, though he has been pretty knowledgeable so far. I'll mention that to him when making my case, thanks.

[SueJohnson in reply to ID158]

You can get an inexpensive jewelry scale on Amazon $11 that measures down to .01 gram and shave off a bit of the tablet and measure it to divide it into 1/4 pills.

[707twitcher in reply to ID158]

I believe Belbuca dosage should be the same as the sublingual films or pills. The 7-day patches are different - you typically need less in total with the patch than with sublinguals. 225mcg is a very low dose. I wouldn't hesitate to bump that up until you get 100% relief. I get by on anywhere from 200mcg to 400mcg normally. But I occasionally get break-thrugh symptoms and have to take an extra 100 or 200 mcg to get back to sleep. The sublinguals are fast-acting - 30 minutes or so, so it's easy to add more and get back to sleep quickly. As I told ID158 below, it's much easier to cut the sublingual films/strips (Suboxone) than the pills, so I would recommend that.

[JenniferBut]

I have been on 5mg bup patch changed each week for around 3 months. Alone it didn't do anything but with 5 mg of methadone it works well. Plus 5 mg of Amitriptyline to help stop tolerance.The issues I have with opioids are the usual ones: mood problems, constipation, hyperalgesia ( I have RA and fibromyalgia).it's made my pain much more intense.

I also get very sleepy.

But, saying that, it's all better than RLS.

Good luck 👍😎

[707twitcher in reply to JenniferBut]

Not sure why you are combining opioids? The 5mcg patch if very low dose. I would think the logical next step would have been trying larger patch - 7.5 or 10mcg. The combination might ultimately be what works best for you, but I would suggest trying higher dosage patch to see if eliminating the methadone helps with your side effects. Better yet, get some sublinguals to supplement the patch - then you can titrate the dosage much more quickly and easily to test this idea.

[JenniferBut in reply to 707twitcher]

I'm happy to trust my specialist at this time, I will ask him about his reasoning next time I see him.. I do agree with you re increasing the bup and not adding methadone. I know others who take same as me too so it's definitely a thing.I find seeing drs quite traumatic and I didn't have the emotional energy last time to get into asking him much. It all gets a bit much for me.

Thank you

Jen

[restlegs1 in reply to JenniferBut]

I echo JenniferBut's situation, which is almost identical to mine, except that my patch is 2.5 mg/sec. I take 5 mg methadone, and 5 mg amytriptyline. I have been on the patch and the amytriptyline for nearly three months two and it has been life-saving. We share the same pain specialist, and I trust his judgement. I have no side effects.

[JenniferBut in reply to restlegs1]

Thank you, yep my dosage is exactly the same, I trust him, he is a very smart man. If I keep getting break through, I'll contact his rooms. You are right, I may need a small increase.

[SueJohnson in reply to JenniferBut]

You might want to take someone with you to help with the anxiety and perhaps think of the questions to ask for instance how much. It is traumatic.

[Keith1231]

I was very fortunate to find a specialist who prescribed Buprenorphine. I started the dose 3 weeks ago as a trial 0.4 mg to a maximum 0.8mg each night. Tablet size is 0.4mg. You can cut the tablets which are very smal so you can achieve 0.2mg or 0.6mg. It made a little difference to my RLS however, I was still very sedated the next day. There came a point 3 days ago that I had trouble breathing at 3.30am, my doctor put this down to the seditation effect of the Buprenorphine and a build up of fluids in my body, for which I had medication for but hadn't been taking. I have now stopped Buprenorphine mainly because of the sleepiness during the day. I hope it works for you.

[Shumbah]

5 years now

2 mg buprenorphine

98 percent success rate

Do not take the full dose on your first night

Break it up and only take enough to stop your symptoms it will increase over the first week

[pookiebyrd]

I have been using Buprenorphine for RLS for about a year and a half now and it has almost completely stopped all of my RLS symptoms.it works wonderfully for me and I also sleep better.

[JenniferBut in reply to pookiebyrd]

That's amazing 😍

[Marlayna67]

I go back-and-forth between buprenorphine and oxycodone. The buprenorphine works but causes insomnia so I try to take it every three days. The oxy works until about 3 AM in which case I wake up with RLS and have to take another and wait till it hits. Sooner or later I’ll find some schedule that works 100% but I’m hobbling along as is. I can say that the bump works 100%. It’s just that I need to sleep sometimes.

I love to watch movies in the early evening and taking oxy will allow me to sit for an hour and a half. If I take bio, I’m going to fall asleep. It’s a delicate balance.

[Simkin]

Yes I have had a year on buprenorphine with no RLS.

[JenniferBut in reply to Simkin]

What dosage?

[Simkin in reply to JenniferBut]

O.2 sublingual tablets.

[JenniferBut in reply to Simkin]

Fabulous 😍

[Simkin in reply to JenniferBut]

Indeed! After 40 years of RLS it has been life changing!The only drawback is that I have lost a stone in weight and I am thin anyway but I gather from others on the forum that this is par for the course

[Knittingasweater in reply to Simkin]

Same 2 mgs of soboxone no RLS anymore , saved my life.Although my body is physically dependent on the soboxone still better then RLS.

[flobbest]

I'm in the USA and have been using suboxone for a month now. It comes in 2 mg film which I cut into eights so .25 mg (250 MCG). It completely stopped my RLS the very first night, and every night since.

I do have the usual side effects i.e. insomnia and constipation which are manageable. I take a 10 mg THC gummy (Indica) at night for sleep, and a few fiber gummies for the constipation. I'd like to get away from the THC but have not been able to yet.

It's been a life saver for me and totally worth the side effects to be RLS free.

[grandma_of_7]

works great! But I just developed opioid itch so I’m going to have to try something else next

[pianoplayerPLMD]

Unlike nearly everybody else who replied to this post, Buprenorphine (BUTAC), completely failed for me; I had 10mcg/h patches for 3 months, and it just didn't work.

[grandma_of_7 in reply to pianoplayerPLMD]

Bummer! I'm not familiar with BUTAC? I took tablets that dissolved under the tongue, worked great

[Retiredlady]

I am from Melbourne Australia. After coming off sifrol with the help of codeine , I had success with Targin for a few months BUT it relief only lasted 6-7 hours.

My sleep specialist suggested I try Buprenorphine …I cannot believe how wonderful this drug is. I only take .25mg at 9pm each night and have no RLS symptoms until 8pm the next night.

I am , however, a little disappointed that I still don’t sleep soundly and wake at least 2-3 times every night ( luckily I have no RLS symptoms, just feel restless and anxious)

My gp has prescribed 2mg diazepam but I am too nervous to take it with my Buprenorphine!..wondering if anyone else is taking both?