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Restless Legs Syndrome

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buprenorphine for RLS

RC723 profile image
42 Replies

I have been trying doses of suboxone for RLS.

for some people it is magic that gives them there life back.

I took all the way up to 8 mg and it didn’t do much 🫤 I don’t get it. We are more experts than the doctors so my question is,

does anyone have any clue why 8 mg of buprenorphine would not even touch my rls ? It’s so weird now I have to experiment with methadone.

does anyone know what 10 mg of methadone equivalent would be for buprenorphine?

42 Replies
Amrob profile image
Amrob

The doctor who first prescribed buprenorphine for Shumbah (she is a champion for buprenorphine on this forum) seems to think that it must be straight buprenorphine to be effective (ie without the naloxone).

healthunlocked.com/rlsuk/po...

Others who have had experience of either/both may weigh in on this…

RC723 profile image
RC723 in reply to Amrob

That’s a great point, I was wondering if that was the case. I really do wonder

Butterflysun1 profile image
Butterflysun1 in reply to Amrob

That is very interesting. I have never understood how any opiate with the addition of naloxone can be effective as the naloxone blocks the opiate effect.I am no pharmacologist but my gut instinct is to say if anyone swaps to another opiate ( or the same opiate without the naloxone ) then do not jump straight to the dose equivalent that didn’t work but start at the beginning again as otherwise you may be taking the equivalent of an overdose your body can’t handle.

If there are any pharmacologists on this site or opiate specialists who disagree I would bow to their advice, otherwise I would take great care

Paganpatrick profile image
Paganpatrick in reply to Butterflysun1

I’ve been on large doses of morphine/Tramadol/Codiene with considerable side effects. I’m now on 35 mcg Buprenorphine which handles the pain without side effects. As I understand it the naloxone allows the opiate to work on pain receptors in brain but blocks the side effects. A simple view but I will ask my pain Consultant when I see him in a couple of weeks.

LotteM profile image
LotteM in reply to Butterflysun1

I am not a pharmacologist. But I think I remember that in the opioid registry results presented by John Winkelman and available on the site of the registry Subuxone is mentioned as one of the opioids. Also, I think it is in the table of opioids in the updated guidelines in the Mayo Clinic Proceedings.

Edit: I checked quickly and couldn't find it in the opioid registry results, but the combination with naloxone IS mentioned in the opioid table of the updated guidelines.

Also, the one opioid registered for RLS is Targinact, a combination of oxycontin and naloxone.

Paganpatrick profile image
Paganpatrick

Hi, sorry to hear the Buprenorphine isn’t helping. Fortunately, for me it does but I’m on a high dose of a 35 mcg patch. But this is primarily for Fybromygelia and lumbar pain, the reduction of RLS by at least 80% is a side bonus! I don’t know the comparison ratio with methadone but I believe Buprenorphine to be stronger. Buprenorphine is used primarily for end of life cancer patients or you’ve maxed out the safe doesage of another opiate such as morphine and it’s stopped working. That’s me, I’ve been on prescription opiates for 15 years following a bad parachute landing. Taking Buprenorphine and Oramorph for breakthrough pain has changed my life since last June. Maxed out on Morphine, Tramadol, Codiene and Gabapentin I now get more relief with none of the terrible side effects.

Strangely both Buprenorphine and Methadone are used to wean people off opiates. I hope you find something that works as well for you.

RC723 profile image
RC723 in reply to Paganpatrick

Were u able to function being on opiates for 15 years ?

Paganpatrick profile image
Paganpatrick in reply to RC723

I certainly couldn’t function in the military anymore but that was because of the six herniated discs on top of a shrapnel injury and several other incidents, as I was not on opiates when retired. But I was in policy not active duty.

Buprenorphine is actually a stronger opiate but without any side effects so yes I believe I function better. I certainly wouldn’t want to go back on previous meds they have an insidious way of creeping up on you as GP just kept on upping dose. But they cannot prescribe Buprenorphine for some strange reason.

Fortunately my wife is an ICU nurse and heard of a new pain Consultant. As I said my life changed last June after swapping meds.

TeddiJ profile image
TeddiJ

Hi, RC723. Interesting, as Dr. B is switching me from oxycodone to suboxone film. Is that what you have been trying?

I used to take 7-10 mgs of methadone at night, but I don't know how it equates to other opioids.

I am wondering if you will be able to switch back to a regular opioid? Because he said suboxone changes your opioid receptors.

And then is it true that if we have a terrible accident and need surgery, we would actually feel the surgery after being on suboxone?

I haven't yet started it, but I am worried. Right now I am using kratom and it would no longer work if I start the suboxone, according to Dr. B.

I welcome any advice! Thank you!

RC723 profile image
RC723 in reply to TeddiJ

I’m taking suboxone tablets. Mine has buprenorphine and the opiate blocker nalaxone. There are people on here taking temesgic wich does not contacting the opiate blocker, it’s only contains buprenorphine

You should def try it, some as you probably know take half a miligram even less. As far as surgery or anything, yea the idea is it is used for addicts to get clean so you can’t get high from an opiate however that’s a question only a doctor or anesthesiologist can answer lol.

I know many people who had drug problems and used suboxone, I’m not sure it changes your opiate receptors permanently, I think like anything the dopamine and receptors return to normal when you quit using the drug .

TeddiJ profile image
TeddiJ in reply to RC723

FYI-this is what he said about the naloxone:"There is a very minimal amount of naloxone in the Subutex. It is mainly there to prevent constipation which occurs with opioids. I doubt this would cause any significant problem with having surgery."

Heideinthewild profile image
Heideinthewild in reply to RC723

there is a class action lawsuit for subutex I believe for tooth loss

Shumbah profile image
Shumbah in reply to TeddiJ

Honestly most doctors do not know about the surgery problem. Dr Glen Brooks from NY Is a qualified and practicing anesthetiser 2 days per week he says we should NOT take Naloxone and you should make your doctors aware that it must be singular Subutex and to explain the surgical problem.

Naloxone is to stop people with addictions from adding extra opioids it is not for us.

Ps I have come across anesthetiser that actually do not know the difference between Subutex and Suboxone and I have had to educate them and the surgeon.

Blows my mind that is why we must be the specialist of our own condition.

TeddiJ profile image
TeddiJ in reply to Shumbah

Thank you, Shumbah! You would think Dr. B would know?! Is that even possible that he doesn't? (He did prescribe Suboxone to me.)

Shumbah profile image
Shumbah in reply to TeddiJ

Yes it most certainly is possible.I was in the little pre OP room about to be wheeled in for anesthetic for an 8 hour surgery neither the Surgeon or the anaesthesiologist new the difference between Subutex and suboxone.

I was taking Subutex and said they would have to cancel the surgery , I had already tried to explain on the phone the 2 weeks prior that I did not need to no would I stop the subutex.

Luckily I had an email from Glen Brooks MD and he is an anaesthetist.

So after much persuasion the Surgeon came out and talked to me lucky for me I knew him quite well and he had already performed 3 major operations on me previously.

He knew I had some medical background and was well versed and the anaesthetist had gassed me on my most recent surgery a year before. This was the instruction I was given by the surgeon

He said K..... if you feel anything I want you to focus really hard and wiggle your big toe, he went onto say that he would most certainly notice if I did and take appropriate action.

Ps I have meet a lot of doctors that do not know the difference, my doctor has accidentally written me up for Suboxone 3 times and I have to go in and explain again.

In my experience I have met very few people who know the difference between Subutex , suboxone , Temgesic , and methadone

they do not even know what receptors they hang onto , or even half life.

Like Olivia Newton John Bless

We have to learn and then teach .

I would handle it this way , Tell him you are planning few cosmetic surgeries he is not going to check that and you need to be on Subutex , teach him that way.

Spread the word !!!

TeddiJ profile image
TeddiJ in reply to Shumbah

Super helpful! Thank you so much for the info! I will message him right now.

Fatniss profile image
Fatniss in reply to TeddiJ

Hi Teddi let me know what he says. He also wants me to try suboxone next.

TeddiJ profile image
TeddiJ in reply to Fatniss

Oh, really, Fatniss? Interesting! What had you been taking? (Sorry-my memory sucks right now).

I will let you know. I talked to the desk and also sent him a message.

Fatniss profile image
Fatniss in reply to TeddiJ

I'm taking 1 mg ropinerole, one hour before bed, and have been tapering off of pregabalin. I'm about to begin my last 10 days on pregab, and then I'll be off. This drug did not treat me well AT ALL. I've been tapering from 150 mg since December, real slow. Every time I reduce the dose (by a mere 6.25 mg), I experience an increase in insomnia, anxiety, and RLS. I still work full time, so this has been a challenge. As usual, I'm having trouble finding a pharmacy that will fill the prescription for suboxone. (I had this issue with methadone, which gave me bad insomnia). I'm beginning to lose hope in the opioid option, simply due to pharmacies unwilling to prescribe. Did you not tolerate the oxycontin? I also ordered hirsuta, but have yet to try it.

TeddiJ profile image
TeddiJ in reply to Fatniss

That's right! Thank you for reminding me and sorry my memory sucks. I think it must be the opioids and god knows what-maybe all the interrupted sleep.

I hear you and remember us talking about the pharmacy issue. I, too, am having an issue with the new prescription right now. Not sure what it is, because suboxone is less alarming and you can get refills-Dr. B said this. But, sounds like we should be on Subutex instead, as you saw above.

I did tolerate the oxycodone BUT i needed too many to get through the night. It only lasts 3-4 hours, too.

I am alternating between hirsuta and kratom. not sure if that is good or bad but i have no choice. Even with 2 doctors, I would be left high and dry with my rls more often than you would think.

I think in general and FYI, we may need less hirsuta than kratom, so start with just a little.

I also take pieces of ambien 10 mg caplet sometimes to help me sleep, as well as Delta 8.

Again, remind me please-did you try the Delta 8 for sleep? That just might work for you and it is so easy to get! For once in our lives!

Also, did you try the gaba supplement for sleep and RLS? REB says it makes all the difference for her, so I am trying that, too. Along with baby aspirin.

Sorry the methadone didn't work out for you, but, on the plus side, I am glad to be off of that one and you might be glad one day, too. I also stopped taking Horizant, which luckily you can just stop without tapering. It just didn't seem worth taking and I seem to have rls or plmd either way.

Also sorry for what you are going through with the tapering off and the drug itself. That is awful and I hope you get off of BOTH of those drugs soon.

TeddiJ profile image
TeddiJ in reply to Fatniss

PSSSSS: this is what he wrote to me:"There is a very minimal amount of naloxone in the Subutex. It is mainly there to prevent constipation which occurs with opioids. I doubt this would cause any significant problem with having surgery. "

Fatniss profile image
Fatniss in reply to TeddiJ

Thanks for this info. He is also offering to order me belbuca, which is a lot more expensive. Over $400 a month for 60 films. It's easier to obtain (he says) because it doesn't require a special license and can address the pain associated with RLS. The problem is the pharmacies don't want to fill the suboxone.

RC723 profile image
RC723 in reply to Fatniss

I use to take suboxone for addiction years ago I never told anyone this in the forum. Now I have disabling RLS and I’m trying opiates again it’s horrible. The only good thing is this disease has showed me and reminded me how much I hate opiates and despise taking them. The reason I’m telling u this is I don’t get it ? Years ago I got my suboxone one script every month never had one issue with it. This was also 12 years ago so I guess the opiate crisis is worse ? What state r u in ?

Fatniss profile image
Fatniss in reply to RC723

I am in California. I’m just reading now about how Walgreens is implicated in the opioid crisis.

RC723 profile image
RC723 in reply to Fatniss

Your in Cali ? I don’t know cvs always worked fine forMyself

Fatniss profile image
Fatniss in reply to RC723

What do you despise the most about opiods?

RC723 profile image
RC723 in reply to Fatniss

Well I successfully defeated my addiction problem years ago and now to be put on opiates forever I’d rather die to be honest I’m only 34. I hate the stigma of being on an opiate , it destroys your sex drive, they make me depressed and tired.

Fatniss profile image
Fatniss in reply to RC723

I feel sorry for you. RLS at such a young age... and I see from your original post that a hefty dose of suboxone does nothing...I hope that you have a good doctor that can help you find a path to relief. Accepting that I have RLS for life has a huge part of the battle...

Fatniss profile image
Fatniss in reply to Fatniss

RC how do you currently get your suboxone prescription filled?

RC723 profile image
RC723 in reply to Fatniss

My doctor in Connecticut… he prescribed me a month supply in 2021 and I just ran out I was constantly trying it on and off.

TeddiJ profile image
TeddiJ in reply to Shumbah

PS-was Olivia Newton John taking it? Or, please explain. So sorry to hear that news-it's awful.

Thank you-I left a message to try to get the prescription switched out. There was already an issue with the suboxone prescription (per usual, in my world! hence my piled-up fears of being dependent on opioids).

Thanks, again, for this very good and detailed explanation!

Shumbah profile image
Shumbah in reply to TeddiJ

Buprenorphine is not addictive it has a ceiling effect , which means if you try to take to much it simply turns off and does not work.That is why it is good for addicts they can't abuse it.

TeddiJ profile image
TeddiJ in reply to Shumbah

FYI, Shumbah. This is what he wrote to me:"There is a very minimal amount of naloxone in the Subutex. It is mainly there to prevent constipation which occurs with opioids. I doubt this would cause any significant problem with having surgery."

Shumbah profile image
Shumbah in reply to TeddiJ

HI Kester, Always so nice to hear from you.

The problem with Buprenorphine is two fold. First, very few physicians have even heard of it, and in the States, you have to take a course, pass an exam and get the DEA to approve your application. The reason is that it is mostly used to get opiate addicts off their opiates. Yes, it is just another opiate, but unlike other opiates there really is no need to keep increasing the dose as you would have to with morphine, or oxycodone. So, there is no opiate "creep", making it a very nice drug. Other physicians associate it with Suboxone which is a combination of Buprenorphine and naloxone, only used for opiate addicts. Many physicians confuse the 2, and think that anyone on Buprenorphine is actually an opiate addict. Physician ignorance is a big part of the problem. As is true with governing bodies and insurance companies. Most will not pay for Buprenorphine unless you are an opiate addict being transitioned to Buprenorphine from other opiates, including heroin. So, it is a mess. When it comes to treating RLS any opiate like Temgesic will be somewhat effective, but again, Buprenorphine is the most effective with rarely any need to keep increasing the dose. And very few physicians want to prescribe opiates to anyone for any reason. The pendulum has swung too far to the wrong side when treating any condition, including chronic pain, with any opiate.

I would love to read your manuscript when finished. Please don't embellish my role. You are the hero for travelling the world in search of cure, and then trusting an unknown cranky old physician in far away New York with your care. Keep up the fight on every continent...

My very best wishes for the New Year,

Glen Brooks

I will try to find the other email I have on using only single form buprenorphine.

Knowing what I know I would not wish to go into surgery.

TeddiJ profile image
TeddiJ in reply to Shumbah

wow. thank you! sigh....

this man sounds incredible!

TeddiJ profile image
TeddiJ

Thanks, RC!

RC723 profile image
RC723 in reply to TeddiJ

Oh by the way, I assume the Dipyridamole never ended up working at any dose lol please keep us posted on the buprenorphine.. when r u getting a script ?

TeddiJ profile image
TeddiJ in reply to RC723

I tried a too-low dose of the dipy and haven't gone back to trying it at 300 mg's yet. When I first tried it, I felt sick and headachy so I would have to build up again. But, I plan to try again soon! Dr. B did not recommend it for me, however.

There was a problem with the script (of course!) but I should be getting it soon. Meanwhile, I am using kratom and hirsuta. I am worried about these backups no longer working though!

Shumbah profile image
Shumbah

It might be the naloxone , you need to be on Subutex ,Dr Glen brooks said that was important not to have naloxone

Are you in Australia I’m happy to talk to you on the phone .

There are a couple of things that can override Buprenorphine

Shumbah profile image
Shumbah

Buprenorphine hangs onto a lot less brain receptors luckily the right ones for most of us and a shorter half life than methadone.Methadone is 46 to 60 hours that is harsh on your bowels however still better than this beast of a disease.

I would certainly try Subutex keep artificial sugar including monk fruit sugar than 2 per day teaspoons per day and not at night.

I did make that mistake last Christmas I worked it out quickly took 3 days to full rectify.

Artificial sugars really change the brain so anyone who is reading this does drink diet soda .

Do some reaserch and you will see why it upsets RLS so badly

Do you take metformin?

TeddiJ profile image
TeddiJ in reply to Shumbah

Hi, again, Shumbah. I finally stopped drinking diet coke, which I dearly love. I have a very good hormone doctor and she has been on me to quit for many years. She said it over-excites the brain, or something like that.

Stevia is fine though, correct?

Thank you!

Shumbah profile image
Shumbah in reply to TeddiJ

any type of sugar , fake or real in large volume especially afternoon will causes me problems.

You know the tiny takeaway sachets I stick to 2 per day.

It really does have an impact on the brain even when natural its like herion to mice. Its very addictive which means it is changing our brain. It must do something to the receptor.

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