Buprinorphine/methadone anyone?

[Nikwat]

LONG TERM RLS and PLMD sufferer here. Reaching out to anyone who may have tried methadone or buprinorphine? I could list everything else I have taken for this disorder but I think you would get bored! These medications are my next hope (if I can find a prescriber).

[Hidden]

Try contacting shumbah

Here's a link to her recent post

healthunlocked.com/rlsuk/po...

[Hidden]

Also see this post

healthunlocked.com/rlsuk/po...

[Shumbah]

Stroke of luck I have seen your post .

YES buprenorphine works 100 percent of the time no downsides for me.

Buprenorphine is a very superior drug unfortunately it is not well known. I have personally spoken to many professors and doctors regarding the lack of use of buprenorphine in RLS Sufferers. The resounding answer has been that methadone is cheaper.

The reason buprenorphine is better than methadone is it hang onto less receptors in the brain and has what is called a ceiling effect . The ceiling effect blocks overdosing once it hits its ceiling it cannot keep stimulating those receptors this also stops you from craving opioids unlike oxycodone where people start looking for more and more .

If you take other opioids on buprenorphine the ceiling effect blocks them from working stopping overdose .

There is ZERO creepage my new word lol. The evidence shows when you find the dose that works for you it will NOT CREEP UP ! So No augmention ! The evidence shows that it will always continue to work this comes directly from Professors and doctors.

I was prescribed 2 mg I have never needed more than 1 mg the only thing that will make me need an eye lash more will be exercise which really exacerbates my RLS . I will never ever need to go above my prescribed dose 2 mg .

Buprenorphine is used for people who suffer from addiction there average dose is 32mg big difference.

I live in Australia and my doctors are in the USA they all said doctors should be really happy to prescribe buprenorphine in Australia because it is the safest opioid on the planet.

It can be tricky to access buprenorphine having said that my success rate is rising .

I seem to be cracking the code.

I have copies of Professors and doctors letters regarding the use of buprenorphine for RLS that others have printed off.

You can watch my video on YouTube Kester howard ,I need to do a follow up one .

What country are you in ?

I may be able to help depending on where you are .

The success rate with people I have worked with to access buprenorphine is 8 out of 10.

8 have 100 percent success .

Professor Winkleman said to me that I obviously don’t suffer from insomnia as some people although stops there legs still need to take stillnox or some such drug with buprenorphine to sleep .

The 2 out 10 people I know who have had issues are usually in augmention from other drugs and still weaning off tramadol , high dose Kratom etc .

I am also suspicious that metformin maybe exacerbating SOME people’s RLS and causing augmention type symptoms . THIS IS ONLY MY THOUGHTS .

Buprenorphine best form is sublingual due to easy adjustment and 24 hour coverage.

Please let me know where in the world you are ?

All the best 🙂

[Nikwat in reply to Shumbah]

I know you! We have been speaking via text.! I'm the gal from Northern NSW. Have joined this site because of you! I am collecting as much info as I can before I see my specialist next week. Xx

[Shumbah in reply to Nikwat]

Gotcha 🙂

[divasmom8]

Hello, I am so very sorry that your RLS has increased to the point of needing these medications. However, I can assure you that Methadone is a very safe alternative to dopamine drugs and other opiates, and it works!!! I suffer from 24/7 full body RLS, I wanted to die, I was that miserable. I have taken Methadone for 6 years now, 5mg every 12 hours. It has allowed me to live a normal life, finally! I sleep well and don’t pace the house at all hours. The only down side is the Constipation that comes with all opiates. I resolve that by taking Miralax daily. Methadone has literally changed my life. I see a doctor at a teaching hospital where there is an entire department full of specialists that treat movement disorders. Please feel free to ask me any questions you may have.

Best of luck,

[Nikwat in reply to divasmom8]

Thank you so much for you reply. May I ask what hospital you are speaking about? I contacted a clinic in New York ( I live in Australia) and the head doctor he was very helpful but obviously can't prescribe anything to me here. I am collecting information to show my doctor next week.

[divasmom8 in reply to Nikwat]

I am a patient at UCHealth Anshutz Campus,Movement Disorder clinic in the neurosciences Department. (University of Colorado). I am very well cared for there and my doctor is extremely caring and patient. When describing what it is like living with my symptoms she got teary eyed. I know she is doing everything possible . I tried to link the hospital page but the site won’t allow it for some reason. It is easy to find. Good luck to you!

[TheDoDahMan]

Low-dose (5 mg twice daily) methadone has brought my quality of life from "not worth living" to "near normal" in one fell swoop. I mean IMMEDIATELY. The two problems people still have: 1) Finding a doctor willing to prescribe it, and 2) Finding a pharmacy willing to fill the prescription.

[Heatherlss in reply to TheDoDahMan]

How long have you been on that dose ? Presumably, you live in the US right ?

[Nikwat in reply to Heatherlss]

I would be interested to know that also. Xx

[TheDoDahMan in reply to Heatherlss]

Hi, Heather,

My first prescription for methadone was written in November, 2018, and has been re-issued and filled every month since. Research by me has shown that it is common that, unlike for many other uses of opiates, there will be no tolerance build-up requiring a gradual increase in dosage. Once, I spoke to another RLS patient in my doctor's waiting room, who said he had been taking the same low-dose therapy for 10 years without having any loss of efficacy, or need to increase dosage.

I live in Nevada, but have to travel to my prescriber's office on California's west coast every 6 months for re-examination, in order to fulfill the Nevada State Board of Pharmacy's requirement of maintaining a "bonafide relationship" with my prescribing doctor.

Currently I am attempting to find a local doctor willing to write my methadone prescription, but no luck so far. If that changes, I will post such on this board. It should be noted that my CA specialist required me to go through (unhelpful) regimens of dopamine agonists and delta 2 ligands before he would write for the methadone.

[LotteM in reply to TheDoDahMan]

Hi DoDahMan, good to hear!

May I ask why you take the methadon twice daily? Did you have daytime symptoms? Does it guarantee a more stable level of methadone in your blood and -thus- better coverage and less aide effects? Or any other reason?

[TheDoDahMan in reply to LotteM]

Hi, Lotte,

My prescription is written thusly: "Take half to 2 tablets by mouth three times a day as needed for 30 days." Since there are 60 [5-mg] tablets per container, that is a average of 10 mg (2 tablets) per day. My doctor allows me to split tablets in two (thus 2 [2.5 mg] halves), to be taken as needed. Because my symptoms vary, sometimes I will take 3 halves at once, before bed, with the other half taken in late afternoon the next day as symptoms arise. Other days, I may take one full tablet at night, and another in the early morning as the heebie-jeebies prevent me from getting my full 8 hours of sleep.

What I'm trying to say is that, as my symptoms vary, my dosages may vary. It is more likely that I will sleep more than 8 hours rather than less. I am in my mid-seventies and retired, so keeping a tight daily schedule is not important to me. I have not tried taking a half-tablet every 6 hours, but that's a thought. In fact, I never take both tablets at once, perhaps because I fear having used up my whole day's supply, in case I wouldn't get my full 8-hours' sleep and then not have any more (that day) to take. So you're maybe giving me a good idea. These methadone dosages are so small that there's no real possibility of hurting oneself as long as no more than 10 mg per day is taken and no other opioids are being used.

I would welcome hearing from other low-dose methadone users as to what times and dosages you find most helpful.

[Heatherlss in reply to TheDoDahMan]

That was so insightful. I could keep reading this response forever. It gives me hope. Gives everyone some hope. Only if we could have access to such doctors all over the world.

I really appreciate it. Congratulations and I hope this relief continues forever.

[Heatherlss in reply to TheDoDahMan]

Parminter could advise you on the dosage and the timings.

[mateloch]

Same. Tried both those with not great effect. Using Fentanyl at moment. Medical Cannabis in the right mix had been suggested.

[TheDoDahMan in reply to mateloch]

Hi, mateloch,

How on earth do you get fentanyl prescribed in these days of opiate panic? Is it a patch? What dosage? What country? Thanks.

[Hidden]

As a long term sufferer of RLS since I was a teen (I am now almost 67), Had tried every drug out there. Several years ago, a sleep medicine physician started me on methadone. I had been taking oxycodone for years but the effect was lessening. I am someone with an addictive personality (think eating disorder and consequences of Aspergers Syndrome) and was terrified to take opiates but I had to get some sleep. I was afraid that I would become addicted and living on the streets breaking into houses for money to buy it.

Surprisingly, with oxycodone , I had no issues whatsoever. I always took the lowest doses that I could get. If you imagine RLS as a volcanic eruption, I had to make a well -thought out judgement call: was this RLS attach a 10 minute venting of a little steam or was my RLS winding up for a "Mt. St. Helen's type of eruption". I could tough out a little venting of steam, but if this was winding up for a huge eruption, I needed to take something. I maintained on a maximum of 20 mg a day for 15 years and usually less. If I did not have any RLS, I did not take anything.

When it got to be 20mg a day every day, I sought help from another sleep medicine physician that my PCP wanted me to see. He started me on 10 mg of methadone twice a day. I stopped the oxycodone immediately. It was amazing. I could lay down and read of an evening or ride in the car. I would wake up in the morning and just lounge in bed thinking this must be what everyone else feels like.

After about a year though, the RLS started to increase again. With my physician's permission, I would use oxycodone for breakthrough RLS in the evening. After 3 years, we agreed to bump it up to 15 mg twice a day, immediately, my oxycodone use for breakthrough RLS fell to zero again.

Never have I ever had any issues of feeling high on either of these drugs. It did not affect my ability to work or drive; it just stopped or lessened the RLS.

A caution with opiates like methadone. I am now physically dependent (not mentally addicted but physically dependent on) on methadone. This is a drug that once started, will require that it be tapered off to be discontinued. It is a long-acting opiate so it may take a couple of days for withdrawal to start but it will start. This may be accomplished by switching to a shorter acting opiate and then tapering off that. THIS IS AN IMPORTANT CONCEPT TO UNDERSTAND! Living in Florida with devastating hurricanes, I made sure that I have a backup supply of oxycodone to withdraw from the methadone should my supply of it be interrupted by some disaster. I discussed this with my physician at length before I started it. I also wanted to make sure this was a long-term solution that my physician was willing to work on me with and not just decided one day to stop without help getting off it.

Another aspect of this is that insurance companies here in the USA may require a preauthorization to use opiates and if you switch insurance you may have to start the whole preauthorization process over again and there is no guarantee that you will be granted it. Fortunately here in the USA, the actual costs of these drugs is very inexpensive. If you shop around or use Good Rx you might be able to get a good price. It also helps to have a regular pharmacy that you have a good relationship so if there are any issues they will troubleshoot and act on your behalf.

I had one pharmacy tech ask me why I was getting methadone. I told here it was for RLS. She said my physician is not supposed to give that out for that. That is malpractice. Besides they will have to order it. I got her name off her tag. culled up the articles from the RLS website and "Night Walkers" and sent it to her supervisor. I asked him to educate her, told him she assuming a pharmacist role instead of a pharmacy tech, and she was rude and disrespectful to me as a customer. I copied it to the store manager and the corporate office. I have not seen her in the store since then, but I do not know what happened with her. I used that pharmacy only on occasion when I was working in Pinellas County and it was convenient for me. I now fill everything at my regular pharmacy where they know me.

Be aware that there are some states in the USA that having methadone in your blood is an automatic DWI or impaired driving. Check with your state before starting it.

There is a good pamphlet on methadone at

fhi360.org/sites/default/fi...

The other thing you need to be aware of in the USA is that the physician must write "for non-acute pain" as the pharmacy can only fill a few days worth otherwise.

The methadone and some oxycodone now and then for breakthrough are maintaining me symptom free. I still get a weird feeling in my legs from time to time but it is not really the same sensations as RLS. It is more the prodromal feeling I got before RLS.

I am feeling better with my RLS than I have ever felt before. I feel like my medication regime has given me back my life and I can enjoy things again

Jerold in Citrus Park, FL USA

[Heatherlss in reply to Hidden]

What a wonderful and heartfelt story Jeroldin. So happy for you that you've enjoyed such sustained period of success( relief). To know that someone can enjoy their life despite having this god-awful disease is so good to hear. Thank you so much for sharing your story with us. Hopefully, I'll take a print out of one of these if my doctor ever gets ready to listen to me.

[Arran55]

Yes, methadone after trying various other medications. Those either did not work or had too many nasty side effects.