Finally, I have found relief - Restless Legs Syn...

Restless Legs Syndrome

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Finally, I have found relief

mjc9906 profile image
22 Replies

After suffering with what my neurologist describes as “severe” RLS since I returned from the Persian Gulf in 91, and trying every course of treatment that has been described on these posts with varying degrees of success, the only thing that was certain was that sooner or later anything that provided relief eventually stopped working. About seven weeks ago my neurologist prescribed buprenorphine (generic for subutex). I have slept every night since then. My wife tells me I dont kick any more. When I want to nap in the afternoon I can without fear of my RLS kicking in. So far, for me, this stuff is magic. I know that some day it may stop losing its effectiveness, but for now I am enjoying living like a normal person. The prescription was for 1 2mg tablet under the tongue twice daily. I only take it once daily, at bedtime. I continue to use a 2mg transdermal neupro patch, Not all physicians are licensed to prescribe this medication because it is controlled. I hope this information helps someone else.

22 Replies
Shir_11 profile image
Shir_11

I too had been suffering 40 years and now I can travel without jumping out of my seat while on Temgesic. I have been using this for 18months now and still going good. I take half around 3pm and the other half before bed. And yes now I can snooze in the afternoon in peace.

67Waterman profile image
67Waterman

Hello MJC - thank you so much for sharing this. I just have one question please. Do you ever drink alcohol (beers down the pub, wine with dinner etc) whilst on the buprenorphine? Big thanks, Sally

Shumbah profile image
Shumbah in reply to 67Waterman

Hi 67 W

My doctor said I can have a couple of wines. I’m not much of drinker however have tested the theory. It’s not a problem the cavet is if you have 5 or 6 in my case it will override the buprenorphine. So yes I do drink on occasion but I don’t knock back shots 😀

67Waterman profile image
67Waterman in reply to Shumbah

Thank you so much Shumbah - that is really helpful. A couple of wines would be great for me! Happy New Year! Sally

67Waterman profile image
67Waterman

Sorry ..... I forgot to ask, what is the "2mg transdermal neupro patch" for? I have recently come off Ropinirole and gone on to Gabapentin. I actually now do not get RLS during the day (which they tell me was caused by Ropinirole augmentation), but it takes me a good three hours of "shuffling" before I can sleep (so am up and down like a yoyo) and I usually revert to taking 0.125mg of Ropinirole just to save my sanity. Kind regards, Sally

mjc9906 profile image
mjc9906 in reply to 67Waterman

Neupro is the drug and it is delivered by a patch worn on the skin. They come in 1, 2, 3 and 4mg sizes. They are known to cause augmentation, and in my case sometimes that creepy sensation occurs in my forearms. I’ve cut way back on it so the side effects are minimized. However, when I dont wear one at all I can feel the symptoms come on so I have been afraid to go cold turkey. I wear a 2mg patch daily

Arjiji profile image
Arjiji in reply to mjc9906

Neupro is the brand name for the patches that contain rotigotine, a dopamine agonist (such as Pramipexole or Ropinirole), but because they are slow-release and transdermal, they produce less of an "accumulation" effect. However, the dose must be increased with the time of use and if it exceeds 3 mlg, it must be left and otherwise there will be an increase in symptoms and a reduction in therapeutic effects (what is known as augmentation). Doses equal to or greater than 4 are used for patients with Parkinson's.

mjc9906 profile image
mjc9906 in reply to Arjiji

Thank you. You wrote it beautifully. Are you a Neurologist?

Arjiji profile image
Arjiji in reply to mjc9906

I am not a Neorologist, I am a Psychologist. But my knowledge about this disease comes because I have studied all the medical articles that have fallen into my hands, scientific journals, and those that I have searched on the Internet, from my own experience as a RLS sufferer for many years, and above all of the great connoisseurs of this disease who write on this website (he does not want to say names for fear of leaving me one) and the own experiences that the partners describe.

This website is a marvel for the sick and brings a lot of knowledge and a lot of comfort to the sick.

Congratulations to its creators and maintainers

Bganim1947 profile image
Bganim1947 in reply to Arjiji

Thank you for your helpful and knowledgeable contributions to this website and its participants. I have also been a long time suffer from RLS at times expanding from my legs up to my torso and arms, I titrated myself off time released Ropinerol, after a neurologist inappropriately increased my dosage up to 12 mgs every time my symptoms worsen. He failed to recognize that I was in augmentation. exacerbated by his continual dosage increases.

I found this website by happenstance as I am in the US, and thankfully several members did recognize that I was in augmentation and advised me to find a new doctor and carefully and slowly reduce my Ropinerol dosage. I was also on the highest dose of gabapentin. I reduced my intake of both meds with great difficulty, but I did it. With the expert guidance of my pharmacist, since most doctors know so little about RLS—even neurologists—I transitioned onto 100 mgs of Pregabalin (Lyrica) 3x/day and 100 mgs of Tramadol 3x/day—a combo recommended by one of the physicians from the RLS association. That did it for me! i was finally free of my daily RLS episodes. I still get mild bouts occasionally, mostly in one leg or another when I am over tired or have over worked my legs. In these instances, I simply apply Magnalife’s Relaxing Leg cream (available online) and the symptoms usually vanish immediately.

Life was good again. Until I had my first knee replacement surgery 4 months ago. The surgeon kept me on Pregabalin but took me off my Tramadol, so I could take Oxycodone for the surgical pain. Tramadol wasn’t strong enough to treat that kind of high level pain, but the surgeon failed to understand that oxycodone is not the same as Tramadol, which the he thought would simply be a stronger substitute for Tramadol and keep my RLS at bay as I recovered. If I ever had any doubt about the efficacy of the Tramadol & Pregabalin combo to manage my RLS, this oxycodone experience settled it. The RLS episodes I had daily during my 17 days off Tramadol were more difficult to manage than the post-surgical pain. I had to take Valium to calm my body down.

I am now facing a second knee replacement for the other leg in March and I am in search of recommendations on how to stay on Tramadol & Pregabalin during the post-surgical recovery, yet still take something in addition to quell the severe recovery pain following the operation , since I can’t take oxycodone and Tramadol together. Any thoughts or ideas out there?

My surgeon, who finally gets the importance of keeping me on Tramadol when we do the next TKR surgery, is recommending Radio Frequency Ablation to manage the pain. Sounds plausible. It’s a procedure used quite frequently now to manage pre and post surgical pain by burning the nerve endings around the knee. Comments anyone?

Sorry for my long post, but I thought it important to explain my back story as it might help others—especially those on Ropinerol and or Gabapentin. Happy New Year everyone.

Barbara

Sleepylamb profile image
Sleepylamb

That is wonderful news. Buprenorphine has helped many on this forum that have suffered for a long time as you have. I am very happy you have found relief and I would like to thank you for your service.

mjc9906 profile image
mjc9906 in reply to Sleepylamb

Thank you for the kind words. Until my doctor prescribed this I thought there was no hope.

Shir_11 profile image
Shir_11

The Buprenorphine patch that I have is called Norspan 5mg which is slow release for 7 days. I wear the patch for 1 week and alternate weeks I use the Temgesic as the patch was irritating my skin a little.

mjc9906 profile image
mjc9906 in reply to Shir_11

I did not know I could take it as a patch. I take mine as a tablet under the tongue at night when I go to sleep. I am glad to know there are other ways to take it; maybe that means that other modalities will prolong the positive results. Thank you. Now i would like to wean myself off of the Topomax and the Neupro so I am only on one medication. Imagine that, in less than six weeks I go from hopeless to picky!

Shir_11 profile image
Shir_11 in reply to mjc9906

I started on the Norspan patch and had instant relief after a couple of hours on it. I was taking Sifrol and Tramal and stopped them both. Buprenorphine has saved my life.

rkatt profile image
rkatt

Great news. Same with me. I take two tabs at night. The result is no hours of severe pain/convulsions ... and sleep. When you say two mg, do you mean two mcg? Mine are mcg, one tenth of an mg? However for me it's touch and go whether my GP will continue to be allowed to prescribe.

mjc9906 profile image
mjc9906 in reply to rkatt

I rechecked the label on the bottle. 2mg

67Waterman profile image
67Waterman

Do you ever drink alcohol (beers down the pub, wine with dinner etc) whilst on the buprenorphine? Big thanks, Sally

Joolsg profile image
Joolsg

I too have found Buprenorphine to be a miracle. I take 0.4mg and my severe RLS has disappeared. More and more of us are now taking it with brilliant results.

I see you're still on the Neupro patch though. I think you should seriously consider reducing it very, very, very slowly as it does cause augmentation and over stimulation of your D1 dopamine receptors.

The Buprenorphine will definitely help and mask this but eventually the augmentation may break through.

Enjoy the respite now and I wish you many nights of blissful sleep.

mjc9906 profile image
mjc9906 in reply to Joolsg

Thank you. That is my plan. I have come off it before Cold Turkey to ‘reset’ and it was miserable. It is a nasty drug, but it is the only dug that has given me partial relief for a long time. As you noted, the side effects are miserable. I look forward to being off of it.

Jerry57 profile image
Jerry57

So glad you found the help you needed. Many of us have been helped by opiates. I began taking tramadol over 20 years ago, and it saved my life. Like you, my brother takes buprenorphine for his RLS. His is a patch taken in mcg dosages, while I take my tramadol in pill form, mg dosages. So good to know there is help for us. Hope it continues to help you for many years.

Hope61 profile image
Hope61

Wow that is awesome !!! I pray to someday sleep and nap like a normal person. Congrats !!!!!

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