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buprenorphine is a Godsend

I've had severe restless legs for many years, and have been on gabapentin, pramipexole, and oxycodone for several years, with only partial relief of my symptoms. My neurologist said some people benefit from small doses of buprenorphine (which is normally given to help people kick a narcotic addiction).
She suggested I take 1/4 of a 2 mg pill, but it caused significant nausea. So I had a compounding pharmacist crush the 2 mg pill and make dissolveable troches containing 0.1 mg each. I now take only 1/2-3/4 of a troche each night, and my restless legs have been almost non-existent for the past 35 days! I'm still on gabapentin and pramipexole, but hope to taper off them soon.

  1. Hi…
    I have suffered for 40 plus years ….recently developed severe augmentation on pramapixole. I was given a trial of gabapentin and pregablin with no effect,I was very fortunate to find a research MD a who put me on 0.5 mg of Bupronorphine. Other than constipaton, the drug is a life saver.
    I haven’t had relief like this in 40 years.
    Unfortunately I was on 1.5 mg of Prama. and didn’t taper it slow enough.
    ( took 3 months). Developed horrible Anxiety and depression from Dopamine withdrawal. The sad thing is, non of my local docs. where aware of dopamine withdrawal syndrome.
    I put myself back on a smaller dose, and will continue this dosage. According to the literature it can take one year before the brain starts making dopamine on its own. It’s a horrible disorder that the general public and the medical community has no idea what the disorder is all about.

    Peter

    1. Hi . I am excited that bupronorphine is working for you! That must be an incredible feeling after all these years. I have found that few doctors are away of the impact taping too quickly from dopamine antagonists can have. I have one relative who tapered over six weeks and was an emotional disaster for months. His brother learned from him and took a year to taper, even when his doctor was advocating for a two-month timeline. He had no negative effects at all. You are wise to stay on a low dose for while. Hopefully, when you finally stop taking it, you will not even notice a difference. Wishing you the best. - Lori (Team Member)



    2. Thanks for the input…I plan to “taper” over one year..
      A pleasure to be associated with this board..

  2. Hi Bearpaws, it sounds like you and I have a lot in common, what with the augmentation, etc etc. I'm a bit surprised you were prescribed Suboxone instead of just buprenorphine, since the naloxone component of Suboxone is intended to keep former narcotic addicts from injecting it IV, and doubt if that applies to you 😉
    I had to increased the strength of the buprenorphine wafers a bit recently, so now I take 3/4 of a wafer under my tongue every night, and it's working well. No restless legs day or night. Each wafer has 0.4 mg of buprenorphine.
    I also asked my neurologist if she could prescribe Belbuca instead of the compounded buprenorphine. Belbuca is buprenorphine in a patch form that is absorbed through the inside of the cheek. I'll be starting at a low dose: 75-150 mcg/day. It's expensive though; $200 a month with insurance.
    I agree with the recommendation of Miralax for constipation. You might also try cutting down the dose. The half-life of buprenorphine is very long; about 24 hours.

    1. How wonderful that your doctor is willing to work with you to find a system of delivery that is comfortable and effective, . I hope the patch works even better that the buprenorphine and that it continues to be effective over time. - Lori (Team Member)

  3. Hello RLSman - I was just prescribed Buprenorphine-Naloxol ("Suboxone"} myself, just under 2 weeks ago, after having taken Requip for almost 17 years! After this very short trial of Suboxone, it seems to be stifling my leg and arm RLS symptoms so far! Previously, I developed the classic "augmentation" while taking the Dopamine Agonist (Requip), requiring a bigger and bigger dose as the years went by, and seeing the spread of RLS symptoms to my left shoulder, and most-recently to my right shoulder. And along these past several years, my neurologist tried all the other meds like the transdermal patch, gabapentin, pre-gabalin, Hydrocodone, and extended release Ropinerole ("Requip"😉. But the other meds didn't knock out the RLS in my leg and allow me to get some sleep like the Ropinerole did. So I went back to Ropinerole, but I've paid the big price of augmentation as I just mentioned. Within the past year I've been very fortunate to have access to a "quality sleep care center" (as the Restless Leg Syndrome Foundation/Organization calls them) in the Bay Area of California. The doctor there had me try gabapentin again, along with some of my Ropinerole, in an effort to reduce my use of Ropinerole, but it just didn't work for me (interesting to note that neurontin (gabapentin) was the first medication that was ever prescribed to me in my very early years of treating RLS, and it worked way back then! But when I later transitioned to regular release Requip for many years, re-use of the neurontin or gabapentin stopped working like it had, early on). I've only been using the Suboxone for about 2 weeks now, taking one-half a strip in the late morning and the other half a couple hours before bedtime. I'm anxious about how long and how well this new treatment will be effective. And the side-effects of Suboxone have hit me, too (Opioid-Induced Constipation), and my anxiety has gotten pretty bad and worrisome. It's a difficult road to travel, changing meds "cold turkey" and trying to deal with a whole new set of side-effects. I would appreciate hearing back from you as proceed with your own trial of Buprenorphine. Many thanks.

    1. Hi . I am glad you are getting some relief from Suboxone, but I wish you weren't experiencing side effects. Are you using Miralax or any other laxitive to help with the constipation? Keep us posted if you don't mind. I will be thinking of you and wondering how you are doing. Warm wishes. - Lori (Team Member)

    2. Hi Lori, Thank you very much for your kind reply to my posting. I appreciate it. To answer your question, I am using Miralax for the constipation side-effect and it took several days, but it is providing me with some relief, thank goodness! I'm not as regular as I used to be, but I'll take any positive response I can get. If anyone else has been prescribed "Suboxone" {Buprenorphine-Naloxol} I would really like to hear from you about your experiences - please share with us, if you will.

  4. How awesome that you found something that brings you relief, . That was smart to find a pharmacist who could customize the medication for you. I hope you are able to get off your other medications and that you remain symptom-free. Thanks for sharing what helps. Warm wishes. - Lori (Team Member)

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