Hi all-I’ve been able to find a clinic here locally in Oklahoma City that is working with me on the withdrawal from pramipexole. The quick background on my RLS is 30plus years deep with the highest dose of prami being 3.25 mg. Buprenorphine is working. I am now at .16 mg with bouts of breakthrough occasionally but still record sleep comparatively. I’m trying to figure out if anybody who has tried this protocol experiences mass fatigue. I’m not sure if it’s the buprenorphine or not but I’m beyond tired during the day - I’m also fighting horrible allergies and a cold, so it’s a challenge to differentiate. For those of you who have successfully withdrawn from pramipexole, did you still experience other withdrawal symptoms outside of refractory RLS?
I’m pulling down in very small increments of pramipexole - .05-.1 mg at a time every few weeks, and I’m taking 1/2 a sublingual buprenorphine tablet a day which is basically 1mg.
Any input would be appreciated. Thank you!!!
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erinjee
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I can't speak to your question, but I am very interested in what clinic you are going to. I am in Dallas, and I am looking for a sleep specialist/neuro to work with, and I am at a bit of a loss. Thw only doc listed in my area on rls.org isn't taking any new patients.
I did a lot of dancing with people up here. Everybody is scared of methadone and subutex. Ultimately, I found Rivus Wellness - they do a lot of work with opiate withdrawal but also in general mental health and were willing to look at the research. I work with Brooke Peyton at the clinic and after our first meet, I’ve been seeing her monthly via telemed so might be a good option for you.
I think that I initially went about it the wrong way asking my doctor and other neurologist people...the people who listened the most were the the actual clinics who work with the withdrawal issues to begin with. You might look around the Dallas area for that too.
Interesting. That is the same issue that I am having. I visited a neurologist for the first time, and her first comment was, when I asked about opioids was "Well, THAT'S not going to happen," in spite of all of the research I brought with me. Her comment was that I was "too young" and that "no one in [her] practice gets treated for RLS with opioids." I thought that seemed really short-sighted, and her concern that I would get "hooked" on opioids apparently doesn't extend to other medications ones can get "hooked" on, like benzos or even the dopamine drugs. It's weird. I am really trying to get off of any dopamine agnoists, and gapabentin/Horizant doesn't seem to be helping.
Anyway. Good to know you found a way around it, and that you are hopefully finding some relief.
You might give it a shot. It also seemed to help to identify those clinics who do research. I tried gaba and pregablin, neither did much on this side. I don’t really think anything is going to “work” while we are withdrawing from the DA’s. Too much of the augmentation/rebound issues in the mix. Maybe they will be a go to when we are free?
Hi!! I’m in Dallas as well and spent years working with doctors/neurologists who didn’t listen to me and stuck to their textbook RLS treatment plans despite all of my terrible side effects with every medication. I haven’t been on this site in a while because I FINALLY found a great doctor who listened to me and was willing to try other options! We finally found that Methadone was best for me and I had no issues for 2 years! Then he retired and I struggled with getting an appointment with another doctor he referred. I finally got in to see him and he’s even better than my last neurologist! I highly recommend Neurology Consultants of Dallas. My doctor listens to me and never tries to discredit my thoughts and feelings nor talk down to me or act like he knows my case better than I do (even though I’m young, which would make it easy for him to do). Instead, he always takes time to listen to me and we find solutions together! I have honestly never had a better doctor of any kind in my life! This sounds like a paid advertisement but I promise it’s just an honest review from a very relieved patient who wants others to find the same!
I think Methadone is an opiate, which is what I take. Your case is obviously going to differ from mine. I had to send all of my years of records to show that I had taken all of the RLS medications that never worked, which is why I have finally gotten to this point in my treatment plan. You’ll notice after talking to Dr. Pavasia that he is extremely attentive to his patients and will work with you to figure out which treatment plan is best for you.
I wish I could meet you in person and hug your neck. I had my appointment Neurology Consultants in Dallas and they have CHANGED MY LIFE. Dr. Mentreddi is amazing, and actually listened to me! I am now on a low-dose opiate and titrating off of DA's. It has been a complete game-changer for me. THANK YOU for taking the time to respond to me. It meant the world to me and my family.
I have already written about it. I am weaning off Pramipexol and now stand at appr. 0,05 mg. At the same time I take Temgesic sublingual 150 mcg = 0,15 mg (Buprenorphine). Sleeping in the night is wonderful (though with more dreams than usual, but luckily not horried ones ).
But I also notice that I am sleepier than before during the day (which is tolerable because I am retired). I am not sure if this is because of the withdrawal from Pramipexole or from the opiate itself. Or the combination. I just have to wait and see. If it is the Temgesic, it is thousand times preferable to night walking.
I have had RLS for over 40 years and through this site I have learned about Buprenorphine and after years on Sifrol, Repreve,Tramal I am now on Norspan 5mg Patch which after 6 months I have no restless legs full stop. I couldn’t even go for a drive without having to get out of the car after a short while to walk off the restlessness. I sleep all night now and must admit I am a little more tired during the day.
Problem for me is that now I seem to have an allergy to the patch leaving a horrid burn like mark on the skin.
I am in Australia and my GP cannot issue me with Subutex so I have now a referral to a specialist in a alcohol and drug clinic for this medication.
My appointment is next week and I am a little nervous. I hate this idea of having to take Opiads but at 70 I would rather quality of life and put up with addiction.
I have had RLS for approximately 30 years now. My symptoms were mild for the first 20years & I took no medication however as time went on my symptoms became unbearable. I was first prescribed with ropinirole and when that didn't work my doctors tried pramipexole. Both of these medication were very scary for myself & my family. I would fall asleep at the drop of a dime and my pre teen grandson, my son or my husband would sometimes find me hunch over asleep in my chair. Many times my grandson would shake me to wake because in his eyes I looked, well, dead. This was something I couldn't bear to let keep happening. I heard that in the UK RLS was treated with methadone. I tried & tried to find a doctor to prescribe methadone here in Chicago with no luck. Not one if them listened, they basically looked at me like a drug addict or crazy lady. I had to make a choice & do the unthinkable and use certain drugs that would allow me to go to a methadone clinic here. They started me on 30 mg regiment which was too high for me and I had to go through about 3 months of adjusting up & down to try & find the correct dose. I am now stable at 18 mg. We did try to go down as low as 15 mg however my legs were unbearable and definitely felt like it did when no medicine was taken. 25 mg & over would make me and very sleepy all day long. I am stable now at 18 mg. I am no longer nauseous & sleepy all day mnot to mention if I happen to forget a dose around 2 or 3 p.m. in the afternoon my legs start to go crazy again and that's when would remember I had forgotten my dose. Fortunately because of covid-19 I am allowed to go to the clinic only 3 days instead of 6 days, however once the covid-19 precautions are lift are lifted I will have to go to the clinic everyday again minus a day for every clean drop I give every three months. I am confident I will have a week's take home in no time because I am not an avid drug user. I currently have 2 days of take-home earned with clean drops. You may be thinking this is a little extreme but I was desperate and I did what I had to do to get prescribed the methadone that I had bread at work so wonderfully in the UK for restless leg syndrome. It's been about 7 months total at the clinic and I am very happy with the outcome. I have a normal sleep pattern probably b/c the clinic doctor also had me get a sleep study done, he swears the RLS has something to do with sleep apnea. I am now using a CPAP machine and receive a daily dose of 18 mg per day of methadone. I no longer fall asleep in my chair, I am able to recognize when I'm tired and go to bed which usually happens every night sometime between 7 and 10 pm depending how active I was that day. I am an early bird and I get up at between 4 to 6 a.m. every morning. The only thing that I am not happy with about is that I have to go to a methadone clinic to pick my dose like someone who has abused drugs all their life . I get happy every time I have a urine drop because the more clean drops I get the sooner I will get full take home. My counselor is confident I am NOT the typical user of drugs and is now looking for a doctor that would prescribe methadone to me instead of me going to a clinic everyday. We are both pretty sure that the odds of this are slim. I really hate that I had to go through the extreme circumstance that I went to to get prescribed something that works so well for my RLS symptoms. I have no desire to fix something that isn't broken for now this is working for me I hope that all of you find what works for you.
I’m so sorry you had to do all of that but I totally get it as it crossed my mind as I was searching too. It’s unbelievable to me how little is still known and/or believed about RLS. I have read other people over the years wondering about the connection between apnea and RLS, on the surface it all makes sense to me that they might connect.
Anguished, thank you for your story. Quite understandable!
Two things strike me in your account. First, methadone doesn't get prescribed in the UK, but it does in the US. If you go to rls.org, the US patient organisation, they'll have a list of RLS quality care centres; I am quite sure there will be one in or near Chicago. It may be worth becoming a member ($35 annual fee I think).
Secondly, you write that you get horrible RLS when you forget a dose. That may well be withdrawal from the methadone. Opioids withdrawal is known to induce RLS symptoms. If you succeed in finding and attending a RLS quality care centre, the drs there may help you find out whether 18mg methadone is indeed the lowest effective dose for you.
Finally, for reference, here is a link to the gold standard for opioid treatment of RLS. It will be updated later this year to include new insights about buprenorphine. mayoclinicproceedings.org/a...
We can’t get Methadone here in the UK for RLS or Buprenorphine. Dr Buchfuhrer and Dr Winkleman in the USA are the top RLS experts and both prescribe Methadone and Buprenorphine. If you join rls.org, the USA RLS foundation, they have a list of centres of excellence where you would be prescribed Methadone.
It seems that there is a lot of prescribing discrepancy in the USA.
There are several of us in the UK trying to get Buprenorphine but so far our GPs and neurologists are not listening.
Hi. I have RA in hips and spine and I'm on Buprenorphine patches in the UK. They are on the controlled drugs list and doctors did have to check with their Bible first after the RA consultant mentioned them to me. I don't think they have much benefit for my RLS and despite what they say, I get horrible crawling sensations if I cut down the patches too quickly when I don't need them so much for my pain. Opiates withdraw does happen with this medication despite what the textbooks say, at least for me. As you say, the choice is continuous pain/lack of sleep or a risk of being addicted - I'm happy to control the addition for quality of life. I'm on 20uG/hr and they do inflame the skin, especially if you go over the 7 day life of them. I think you should ask your doctor again if you think they might help your RLS. My RLS is still uncontrolled but I keep looking for options and this group really helps spread the word of other things to try, so thanks to everyone for contributing.
That's very interesting. Are you on any other medications for your RA and your RLS? You are the first person to report that Buprenorphine does not help RLS. I presume you don't take any dopamine agonists like Ropinirole or Pramipexole?
Hi. Tried ropinirole and Pram, Gabapentin, did nothing for me. Lyrica did, but 14hrs of feeling drunk is not worth it for me. I'm on methotrexate for RA. Found some relief from opiates co-codamol and codydramol which I take for the break through pain from RA. Coming off Buprenophine definitely made legs worse for me. I'm on migraine meds too. My local doctors are willing to try different things, but have an aversion to giving out opiates. Doctors tend to see opiates as a problem, not for the benefit it gives us of respite. Currently just muddling through without meds for RLS. Not sure what more can be done. Might try to get a referral.
I sleep 7-8 hours a night but get up 3-4 times to stretch my legs, so I consider myself lucky compared to some here. My co-codamol before bed and Amitriptyline 50mg helps my muscles relax. I've tried without Amitriptyline and it doesn't change my RLS.
I have suffered with RLS for 30+ years; have tried all the meds including opiates. Have seen Dr. B in California. I am now taking Belbuca 150mcg ( a form of Buprenorphine). To answer your question, yes, I have to contend with tiredness for most of the day. However, because my RLS was so severe, I am willing to put up with the tiredness.
Thank you fir the answer!!! How long has it been for you? How much do you take now? I’m struggling with the tired in a big way-hard to say right now which is worse.
I have been taking Belbuca for about a year. I take 150mcg twice a day in the form of a buccal patch ( a patch that I place on the inside of my cheek. It dissolves there.). I have to fight the tiredness all day. However, as I said, my RLS was so severe that I I can deal with this.
Thanks Shumbah. I feel like you said you took more while you were tapering off of pramipexole, did I make that up? How long did it take you to get off of the prami altogether with this?
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