Low dose Naltrexone or Suboxone. I'm seeing my doctor this week. Which one is best

[Coeso]

After many years of RLS and coping quite well. First the dreaded mirapexin and then tramadol nothing is working at the moment. I was on 0.09 mg mirapexin. Now I'm on 50mg tram. Even if I take 100mgs it's not working so I'm obviously augmenting. Even Kratom isn't helping. I made an appointment with my GP and I'm going to try and get either LDN or Suboxone. Are they approved in Europe and which dose should I try if he gives it to me. I'm up and down all night with very little sleep at the moment. Thanks everyone and hope you are all hanging in there. I know Jools and Sue have great advice on these.

[Joolsg]

Neither Buprenorphine, nor Low Dose Naltrexone are licensed/approved for use in RLS in the UK or Europe.Where are you?

Buprenorphine is a long half life opioid that is used 'off licence' in the UK.

In many health areas it is 'red listed' and can only be prescribed and monitored by a neurologist/specialist.

LDN is not prescribed by GPs in the UK and you can only get it by seeing a private GP and paying for a private prescription. There aren't many reports of its use/effectiveness on here. But I know Flowergirl used it very successfully. She has now left the forum.

Tramadol is the ONLY opioid that also causes augmentation, and it certainly seems to be doing that to you.

You can ask your GP for a one month trial of Buprenorphine, but they may want you to try pregabalin/gabapentin first.

If your GP agrees, start low, at 0.2mg Buprenorphine pills. The average effective dose is 1mg but most people do well on lower doses.

In the UK there are around 12 different brands of Buprenorphine and they start at 0.2mg.

In the USA, pills start at 2mg, so they use a buccal film which can be easily cut into smaller doses.

PS suboxone is Buprenorphine plus naloxo e to stop drug addicts overdosing. You should ask for plain Buprenorphine.

[Coeso in reply to Joolsg]

Thanks that's great advice. I'm in Greece

[Joolsg in reply to Coeso]

Good luck. Let us know what your doctor says. This article may help. Buprenorphine for refractory RLS.

researchgate.net/publicatio...

[Coeso in reply to Joolsg]

We'll I saw my GP this evening and he was as lovely. We discussed my problem and he willingly agreed to prescribe buprenorphine. They only have 2mg so we said to cut it into 4. I was so happy. Then I went to the pharmacy and it seems that they have an extreme shortage, the pharmacist will try and call the place where they may have some. Otherwise back to square 1. They only have subutex here. He has also prescribed 30mg codeine but unfortunately it has 500gr paracetamol in it. I'll take it for a week and then see if tramadol will work again. I do so hope they find the buprenorphine.

[Joolsg in reply to Coeso]

There are worldwide shortages of drugs. It's worrying. ChrisColumbus just posted about it.Hopefully they will find stock soon. I know they only have 2mg pills in the USA and some doctors prescribe buccal film which can be cut more easily into quarters.

[Coeso in reply to Joolsg]

Unfortunately no Buprenorphine anywhere. I dont know what to ask my doctor for Gabapentin and Lyrica just made me feel drunk all 5he time. What is taginact. Maybe they have that here

Methadone is only given in special clinics for drug adducts. Im stuck it seems

[Joolsg in reply to Coeso]

Many US neurologists and sleep clinics prescribe methadone. Are you near one of the top doctors? Dr Winkelman in Boston, Dr Earley in Baltimore, Dr Ondo in Texas, Dr Buchfuhrer in S..California or Dr Berkowski who has clinics in Ohio and Florida?Targinact is Oxycontin with naloxone. It is available in the USA.

[Coeso in reply to Joolsg]

We'll I've decided to try gabapenin again. It was Lyrica which caused more problems. I can't get the other meds here so it's my only chance to some relief. Do you know how long it takes to work ? I'm up to 1200mgs with 50mgs tramadol and it is slightly better. I'm waking up at around 5am with the leg,either one or the other. For some reason it always seems worse when I have it in my left leg. Let's see

[Joolsg in reply to Coeso]

A word of caution about tramadol. Tramadol causes drug induced worsening, like dopamine agonists. It didn't work for me.Gabapentin takes 3 to 4 weeks before It's fully effective. You should take it in 600mg doses, 2 hours apart. Gabapentin isn't well absorbed above 600mg. Also ensure you take any magnesium 3 hours before or after your Gabapentin as that affects absorption.

I'm sorry you couldn't get Buprenorphine or subutex. Either drug is very effective for refractory RLS.

And make sure your serum ferritin is above 200 ( full iron panel tests).

[Nanpat in reply to Joolsg]

Hi, I get very confused when I read you saying “tramadol is the only opioid that causes augmentation “

reason being that I augmented on Targin, and now my Bup only works 30% of the time compared to all the time. Will be posting here soon for advice on my situation, hopefully you will see and offer some advice?

Thanks

[Joolsg in reply to Nanpat]

Augmentation means drug induced worsening of the disease, causing it to ge more severe and spread to other body parts.Targinact does not cause the disease itself to worsen, BUT for many of us, if taken once or twice a day, it causes mini opioid withdrawals, the main symptom of which is RLS. A lot of us experience this. But many do well on just one or two doses a day. We all react differently.

One way to avoid this is to take a lower, 5mg dose every 4 to 6 hours throughout the day.

If Buprenorphine doesnt cover your R symptoms it could be because the dose is too low.

When you post, others will add their comments.

[SueJohnson]

LDN has certainly helped some but I would go with Suboxone.

[707twitcher]

Suboxone was a life-saver for me. I could only get the 2mg/.5mg strips. I've played with different doses, but taking 1/5 of a strip (.4mg) is working great now. I used LDN for years for other reasons (starting with lyme disease) and that did't have any effect on my RLS. I stopped it when I started suboxone, given the naloxone content of suboxone (not sure that matters).

[wildlegs]

Hi Coeso, I've had RLS for 25+ years and the only thing thats worked for me long term is Tramadol. I take 150 mg (3 tablets) a day and have for 10 years now and have great results. I take one at 6pm, a second at 7 pm and a third at 8 pm. Like I said it's been working for me.

wildlegs (no more)

[Coeso]

Thanks all of you for your advice. I have a doctors appointment tomorrow. To tell the truth I'm not very hopeful. Its strange but today I havent taken any meds and rls hasnt risen its ugly head as yet. Very odd as I have had it for many many years. Last night I took 2 otc paracetamol and codeine and also a 15mg codeine which may have been out of date. Ive kept it for a long time just incase I augmented and had nothing to take. I spent the night walking and whilst in bed I used my leg pulsator thing. Tonight Im dreading going to bed. Lets see what happens

[Chouette24]

I’ve used LDN for 3 years now with success.

[Amrob in reply to Chouette24]

What dose are you on Chouette?

[Chouette24 in reply to Amrob]

I take 3 capsules at 1.5 mg. I tried 4 at first but the RLS didn’t go away. So the company I buy it from said to nitrate down so I went to 3 and it worked great.

[Amrob in reply to Chouette24]

Thanks for your reply. Sorry i'm a little confused, do you mean you now take 3mg or 3 capsules of 1.5mg (which means you take 4.5mg)?

[Chouette24 in reply to Amrob]

4.5 mg

[Amrob in reply to Chouette24]

And do you take it morning or night time?

[Chouette24 in reply to Chouette24]

I take it at night before I go to bed. It took about a month of adjusting to find the right dose but once I did, it’s been great!!! I augmented on Ropinirole and had to get off of it.