Buprenorphine, Tephine : I asked my Dr... - Restless Legs Syn...

Restless Legs Syndrome

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Buprenorphine, Tephine

Swimming2018 profile image
22 Replies

I asked my Dr for Buprenorphine and she readily agreed. Just before taking my first tablet last night I noticed that the brand name is Tephine. Does anyone know whether this matters?

My first night I took a 200 mcg sublingual tablet. I was disappointed with the results and am hoping this will get better. I was in less pain but was woken up every few hours with some pain and kicking and had to do usual walkabout for a while then try to sleep again. This went on all night.

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Swimming2018 profile image
Swimming2018
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22 Replies
LotteM profile image
LotteM

Good to hear that you have a new, and for many very effective medicine to try. News meds always need to find their way in your system. Both in how they act in your body and in how you take the med to get the highest efficiency.

May I first ask whether you still take other medicines? Doctors often give new meds without taking out the previous one or review your suite of meds. I know from your previous posts that you take/took multiple meds. For example, treating the results of augmentation while continuing to take the dopamine agonist that caused it required far higher doses than treating previously untreated or baseline RLS symptoms. Also, if you stopped your previous meds and now only take buprenorphine (brand name Tephine obviously), you may experience increased symptoms due to withdrawal from these meds. Finally, in this and earlier post you mention pain a lot. Pain is not a typical aspect of RLS, although quite a few people do experience it and relate it to their RLS. I also had stiff and painful legs when my RLS was not well controlled. Just to make sure, are you sure that your pain is RLS induced? Or may there be a different cause? For example, a trapped nerve low in your back can also cause terrible pain in your legs.

In sum, make a plan about your meds. Best to be discussed with your doctor or pharmacist, although especially doctors are often very easy about reducing and switching meds. While opioids have a bad name, many many other type of meds are equally strong and induce similar dependence and withdrawal when you reduce or stop them. These meds include dopamine agonists (incl pramipexole) and alpha2delta ligands (incl gabapentin). If you want to share, we can caution and advise you based on our collective experience.

Oh, and of course the easy way is upping your dose. But please do it cautiously. Buprenorphine works pretty fast, so you can add 1 (or even 1/2) tablet an hour or so after the first. Or when you wake up due to pain or kicking legs. But buprenorphine remains long in your system and I suspect there is a buildup effect. Some people experience sleepiness during the day and that may be worse on higher doses. My mantra is to find the lowest effective dose as that also keeps side effects to a minimum.

Swimming2018 profile image
Swimming2018 in reply toLotteM

Thank you for your reply. I have been taking 2 co-codomol at night and sometimes a further 2 four hrs later if needed. I'm hoping this won't be necessary now on Buprenorphine.

LotteM profile image
LotteM in reply toSwimming2018

No, I wouldn't assume that the cocodamol is still necessary, as the buprnorphine is much stronger.

So you have stopped all your other meds. Recently? Or quite a while ago? If the latter, it should no longer have any or much effect. And then it means you may need a higher dose to control your symptoms. But you'll have to discuss that with your doctor. Did you discuss dosing? And did you get the liberty to play around with the dosing and timing within certain limits?

As I said, I found some buildup effect. And I also know that quite a few others need a higher dose than 0.2microgram (1 tablet). So it doesn't seem exceptional that this initial dose wasn't completely sufficient.

Try again the next few nights. I hope you find an effective dose and timing soon. Good luck. And never hesitate to come back with questions or to discuss or whatever. 😊

Swimming2018 profile image
Swimming2018 in reply toLotteM

I'm getting the impression that you are also on the same tablets? It's good to be able to talk to someone about it. I came off everything during the first lockdown as the RLS was going through the roof and I wanted to see what my legs were like without medication. It took a long time but I could then see that I was in less pain and the medication was making things worse. I got along OK with co-codomol, watching my diet, hot baths and magnesium oil spray. Unfortunately, as I have osteoarthritis I took sciatica and fibrositis and had to take amitripylene. It helped with the pain but sent my RLS crazy. I've just stopped taking it and whilst RLS has eased, I know I need something to help me try and live a normal life. So, after reading so much on this forum about Buprenorphine I asked my Dr to prescribe it. I have to check back with her as to how I get on. At 67 and having RLS all my life, I think I deserve a little peace and sleep.

LotteM profile image
LotteM in reply toSwimming2018

Wow, you have done a daring thing! And came out well, it seems. 👏🏻kudos for you.

Yes, I also take buprenorphine 0.2mg sublingual. The brand I take is Temgesic, but the main content should not be different. We recently had a post in which many people that take buprenorphine listed their amounts. I can't easily find ad copy a link as I am on my phone. But shall have a look on the website and copy it if I can find it.

I do well on the buprenorphine, after some 4-5 years if trying to find an effective medicine that lasted longer than about 3 weeks. I had that with oxycontin, but side effects slowly became more apparent and overwhelming. The buprenorphine is a relief. It works better, I feel far better and my sleep has changed. I dream again! I hope it works out well for you too. 🤞🏼

Swimming2018 profile image
Swimming2018 in reply toLotteM

That gives me hope. I'll keep you posted on my journey on Buprenorphine

rls-insomniac profile image
rls-insomniac

Hi Swimming, I'm also taking buprenorphine in the form of Temgesic (the same as Lotte). Whilst most people seem to control their symptoms with 200mcgs, that dose wasn't enough for me. I take 400mcgs plus 300mgs of Pregabalin.

When I started taking Temgesic, I was told to stop taking the Oxycodon and Tramadol which I had been taking for around 9 months. The Temgesic took a couple of weeks to settle and my symptoms improved greatly. I think it took this time because I was probably suffering withdrawal symptoms from suddenly stopping the Targinact (oxycodon) and Tramadol. My RLS is now reasonably well controlled, thank goodness! I had been suffering with awful RLS for some 30 plus years!

I hope you will find that buprenorphine will help you manage your symptoms.

Swimming2018 profile image
Swimming2018 in reply torls-insomniac

Thank you for your reply. It does encourage me to keep going. Hopefully, in a few weeks it may have settled.

Pagan707 profile image
Pagan707

A timely post for me. I cannot add but I am due to start buprenorphine next week but as 325 patches to replace the morphine tablets MST that I take at moment. Due to Covid and a very overworked pain consultant I didn’t have time to ask about dosage but he was using some form of conversion chart and due to Covid was done over the phone. We shall see how it works.

Swimming2018 profile image
Swimming2018 in reply toPagan707

Good luck. My second night on Buprenorphine was much better than the first. Please post on your progress.

Pagan707 profile image
Pagan707 in reply toSwimming2018

Will do swim!

Palamino profile image
Palamino

Hi I am also on Buprenorphine I started on 200mcg morning and night but have go e up to 400mcg now and it works well . Good luck

Swimming2018 profile image
Swimming2018 in reply toPalamino

Thank you. Do you take 400 mcg at the same time?

Palamino profile image
Palamino in reply toSwimming2018

My doctor has given me 400mcg tablets now so one in morning and one in evening . Time s vary depending as I work nites so sleep in day sometimes

Swimming2018 profile image
Swimming2018 in reply toPalamino

Good luck with new dosage

Palamino profile image
Palamino in reply toSwimming2018

Thanks and u x

Pagan707 profile image
Pagan707 in reply toPalamino

Thanks Palamino

Crazysober76 profile image
Crazysober76

Please don’t start this medication. I’ve been on it over 15 yrs and he’ll to get off of. Best of luck

Palamino profile image
Palamino in reply toCrazysober76

But it's also hell to have restless legs I would rather be on this as long as it works . It's not ideal but this syndrome is horrendous until they find a cure that you can use all the time and not augment on I think people will try it . What have you gone on to as alot of doctors are only just prescribing it for rls ?

Swimming2018 profile image
Swimming2018 in reply toCrazysober76

They are all hell to get off, but it's also hell having RLS

Joolsg profile image
Joolsg in reply toCrazysober76

What do you take in place of it for your RLS?

Pagan707 profile image
Pagan707

Still waiting for GP to prescribe patches four months after pain consultant recommended them. He claims he never got the letter in but I did! Spoke to pain team and they faxed a copy to GP 20 days ago but still no prescription. Is this reasonable? I know we're in Covid but it's driving me nuts as present meds not working which I said 15 months ago. Should I make a complaint, change Dr? Please advise as I'm at my wit's end.

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