Suboxone works!

[Happygrandmother]

As I stated in my first post, in May, 2023, I have had severe RLS for many years. I suffered augmentation after taking 4 mg Mirapex daily. In September, 2023, my sleep study doctor, at The University of Michigan, prescribed Suboxone. Also known as Buprenorphine and Naloxone 2 mg/0.5 mg. It is a sublingual film that I put under my tongue. It was life changing. My first dose was at noon, and I slept all night with no kicking. It was nothing short of amazing. Life was worth living again. The only side effect is severe constipation, but it is a small price to pay.

[SueJohnson]

That's great! So pleased for you.

There are a number of laxatives you can take for constipation or:

Drink lots of fluids and get plenty of moderate exercise. Then there are prunes (5 or 6/day) or prune juice (however can cause abdominal distress), psyllium husk, Triphala - a 3 herb Ayurvedic formula, oolong tea, Smooth Move tea and magnesium citrate. 2 Kiwifruits/day relieves constipation of half of the people who take it and avoids the problems with prunes.

[Happygrandmother in reply to SueJohnson]

I have tried many different products. I even tried a cereal on Amazon, Poop Like A Champion! I didn't like the taste, but made some really tasty muffins. But, alas, still not a champion! Best results came after using Milk of Magnesia. I will try kiwi fruits.

[nocturne in reply to Happygrandmother]

I love your great sense of humor. Thanks for the levity!

[DicCarlson in reply to Happygrandmother]

Good advice from Sue above. I take Triphala (2000mg) nightly along with fiber supplements.

draxe.com/nutrition/triphala/

[Joolsg in reply to Happygrandmother]

Magnesium citrate pills every night really helps opioid constipation!

[Joolsg]

I'm so pleased. Many of us have switched to Buprenorphine and are also having miraculous results. I presume you are off Mirapex?

[Happygrandmother in reply to Joolsg]

I was in the process of eliminating Mirapex, but once starting the Suboxone, I stopped the prescription totally with no problems. I do still take Gabapentin.

[Joolsg in reply to Happygrandmother]

That is fantastic news. So the Suboxone completely covered the withdrawal symptoms.We now have to keep spreading the news about Buprenorphine and how effective it is, especially for those who struggle to get off dopamine agonists.

[Merny5 in reply to Happygrandmother]

Wow, that is wonderful that you did not suffer the withdrawal from Mirapex. Good for you! I’m curious if anyone else quit abruptly while taking Suboxone and had the same experience. This is a game changer, for sure!

[nick-the-turk]

is this medication available in the UK would anyone know ?

[LotteM in reply to nick-the-turk]

Nick, it is. The substance name is called buprenorphine. Joolsg takes it. It comes in sublingual pills (preferred) and 7d patches. I think you have already been in touch about buprenorphine? It is redlisted in some UK areas though.

Update: check your earlier replies/posts. You were going to ask about buprenorphine some 8 months ago (last summer). Apparently you didn’t get it. And also apparently your current pregabalin/codeine combination is not overly effective. Do ask Joolsg for UK specific advise.

[Joolsg in reply to nick-the-turk]

Yes Nick. Its Buprenorphine. I take 0.4mg a night.Available in many areas.

However, in some UK prescribing areas it is 'red listed' and, even if it isn't, some GPs refuse to prescribe it because they believe patients will become 'dependent' on it. Completely ignoring the fact that we are dependent on ALL types of med for RLS.

HipHop can't get it as his GP surgery don't like prescribing 'opioids'.

So there is a postcode lottery.

Some UK patients can get it, others struggle because it is red listed ( meaning only a neurologist can prescribe) or their surgery is totally unaware of the use of low dose opioids to treat RLS.

My GP in S. London agreed to prescribe it to me in 2021 and it has been miraculous.

If GP refuses, several neurologists will prescribe it, but you'll need to ask how the prescription can be filled.

Where are you? Someone in your area might have been prescribed it.

[nick-the-turk in reply to Joolsg]

as always thank you for replying and your knowledge im under a neurologist so next visit I can ask him and I live in Somerset

[Joolsg in reply to nick-the-turk]

sulishospital.com/specialis...

This doctor definitely prescribes Buprenorphine. And he will hopefully explain how you can get it prescribed, just in case your GP doesn't want to continue a prescription.

I wasted 5 years on Oxycontin and pregabalin after augmentation on Ropinirole. Like you, my RLS was still severe.

I started Buprenorphine in 2021. I've had NO RLS since. I sleep 8 hours every night.

I take 0.2mg at 9pm and 0.2mg at midnight.

Side effects can be an issue, but can be resolved for most people.

For nausea, I used medical cannabis oil with 20% THC and the nausea disappeared.

For opioid anxiety/panic attacks, I added a small dose of pregabalin.

Good luck.

[Joolsg in reply to nick-the-turk]

Nick,You can pay to see Dr Robin Fackrell. He is in Bath and will prescribe Buprenorphine. Ask him if he'll instruct your GP to continue the prescription on the NHS.

sulishospital.com/specialis...

[nick-the-turk in reply to Joolsg]

Thank you ! Is Oxycodone 10mg/Naloxone 5mg similar and can it be taken with my usual medication of 300mg pregabalin and 2 30mg of codeine phosphate at night plus 150mg pregabalin and 30mg codeine at lunch time or would I have to drop one or the other as was prescribed it for intermittent use and I am confused if I could take with normal medication ?

[Joolsg in reply to nick-the-turk]

You can take Targinact (Oxy/naloxone) with pregabalin. As it contains opioids, you should drop the codeine though. Oxy is stronger than codeine.Bear in mind that Oxy/Naloxone should be taken every 12 hours.

I was on it for 5 years with preg and I still had severe RLS.

Buprenorphine is a long acting opioid so covers RLS much better than Oxy. Oxy only lasts around 5 or 6 hours fot most people and that's why it doesn't work well. We get mini opioid withdrawals and the main symptom of opioid withdrawals is severe RLS.

[nick-the-turk in reply to Joolsg]

many thanks joolsg ill take this advice the Doctor

[SueJohnson in reply to nick-the-turk]

I have said this before but I still don't know why you are taking pregabalin at lunchtime unless you have neurological problems - do you?

RLS affects us at night not during the day. I suggest you try moving your lunchtime dose a half hour each day closer to night time and that way you can gradually find out if you need it that early. And if you end up taking it all at night you will have far fewer symptoms.

[nick-the-turk in reply to SueJohnson]

I suffer early evening I can't sit and relax in front the tv im pacing the floor or rolling around on it thats why neurologist suggested the midday dosage admittedly it doesn't work thats why I'm trying to get on Buprenorphine or similar now my children have left the nest the RLS seems to be taking over again or standing out more I fully appreciate what your saying and always respect the info and knowledge of you all on here I just wish I could take you all on my next visit to my GP as I maybe am not making myself clear to him or her never see the same one

[SueJohnson in reply to nick-the-turk]

Try taking your mid day dosage 2 hours before your symptoms usually start in the evening as a good deal of the pregabalin dose you take at lunch time will have worn off by then.

[nick-the-turk in reply to SueJohnson]

if doctor agrees to change my medication to Buprenorphine would i just drop the codeine phosphate or the pregabalin or both ?

[SueJohnson in reply to nick-the-turk]

Drop the codeine. Keep the pregabalin at least until the buprenorphine is working and the side effects are tolerated. Then you can try reducing the pregabalin but only reduce by 25 mg every 2 weeks or you will have withdrawal effects.

[nick-the-turk in reply to SueJohnson]

As always thank you ill take all this info with me on my next visit to doctors in 2 weeks time

[Ruffabug in reply to SueJohnson]

I get it in the afternoon when I have a nap- which I need!

[NanaJay123]

Have you tried fresh figs?

[Happygrandmother in reply to NanaJay123]

No, but I will give them a try.

[TheDoDahMan in reply to Happygrandmother]

A cup of black coffee always "relaxes" me.

[Bantamdyno]

Have you found the trigger points for rls