I have a very good friend who has suffered with severe RLS since he was in his teens. I have suggested to him to join this group but for some reason has decided not to. He has been through all the usual meds. Fortunately he was only on Ropinirole for a very short time quite a while ago. Some years ago he hurt his back and was prescribed oxycodone and to his surprise he finally got relief from RLS. He began doing research and became very familiar with research and information from John Hopkins as well as papers published by experts including Dr. B. He was having trouble getting doctors to prescribe opiates for RLS so he started seeing a concierge doctor here in Southern California. This doctor doesn’t accept any insurance so he is very expensive. But since he agreed to prescribe opiates my friend decided it was worth it because he felt he would not survive otherwise, with his RLS being so severe. By the way, my friend is familiar with information on triggers. Unfortunately my friend is now on a very high dose of oxycodone, 80mg a day spread out in four doses of 20mg. Recently I suggested that he see Dr. B. (who is about an hour and a half drive from him) because Dr. B. accepts Medicare insurance and will prescribe opiates. My friend was interested in switching to buprenorphine. Getting to the point, but sparing you all the details, he has found it very difficult to deal with Dr. B. There has been some very exasperating problems with communication. From what my friend reports to me, Dr. B has been dismissive and arrogant with him. And has given him no help at all. What I am asking this community for is a possible recommendation for another knowledgeable doctor in Southern California who will prescribe opiates and hopefully accept Medicare insurance. Many thanks and Happy New Year to all.
Help for a friend: I have a very good... - Restless Legs Syn...
Help for a friend
Claremont (Los Angeles) - Denise Sharon, MD, PhD - Pomona Valley Medical Center,, CA on RLS Foundation Scientific and Medical Advisory Board - one of authors of of the American Academy of Sleep Medicine (AASM), 2024 Clinical Practice Guidelines for the Treatment of RLS
I imagine the problem with Dr B is he was on an extremely high oxycodone dose as 30 mg is the usual maximum
Thanks Sue. Yes, I think you are correct about the high dose of oxycodone being a problem. I just would have liked Dr. B. to have handled the situation with more straight forwardness and compassion. He did not step up and meet the challenge of helping my friend. He just gave him the run around which has left my friend very confused.
That is sad & frustrating to hear. I do hope one of the other doctors suggested by Sue can help him onto Buprenorphine.Oxycodone can work well but it does seem to cause breakthrough RLS for many. The short half life of Oxy causes the problem. So they increase the dose and end up in difficulties.
Joolsg, may I ask your thoughts (if any) on starting buprenorphine while undergoing tooth implants? I realize your thoughts would not replace a doctor’s advise.
Buprenorphine causes very dry mouth. I would speak to your dentist and ask what he would do for a Sjogrens patient. I use chewing gum, biotene mouth spray and gel.
If I ever lose my teeth because of Buprenorphine I will be getting dental implants.
As long as you maintain good dental routine and visit the hygienist regularly and chew a lot of gum- you should be fine.
I have other names if it takes too long to get an appointment.
Thanks. Would you mind giving me another name or two just so I can approach my friend with as much hope as possible?
San Francisco - Rochelle (Shelley) S Zak neurologist & sleep medicine - one of authors of AASM, 2024 Clinical Practice Guidelines for the Treatment of RLS - on the RLS Foundation's Scientific and Medical Advisory Board while also serving on the Executive Board of the International RLS Study Group - at University of California San Francisco Sleep Disorders Center
Fresno - Lourdes del Rosso - sleep physician - Professor of Family Medicine at UCSF Fresno - University Sleep and Pulmonary Associates one of the authors of the AASM 2024 Clinical Practice Guidelines for the Treatment of RLS - on the RLS Foundation's Scientific and Medical Advisory Board
La Jolla (SanDiego) Quality Care Center at Scripps Sleep Center Dr. J. Steven Poceta Director neurologist
Many thanks.
Dr B is extremely particular about grammar and punctuation etc in emails, and requiring formal mode of address .
This is warned about on his site.
That may be a factor.
None of your-----"hi there bro! I have this thing goin on with no bod helping me ".
Also- the criminally high dose of 80mg opioids could indicate an addiction problem which he is not prepared to deal with..
Good luck.
I also advocate for a friend. He went through a very difficult time weaning off dopamine agonists. Buprenorphine has been a lifesaver. His legs have not moved once/ symptoms have disappeared since starting 0.5mg sublingually each day a 6pm. I do hope your friend finds an empathetic, current, and competent physician.
Thank you. I’m hoping that my friend and Dr. B will repair their communication issue. If not, Sue Johnson has given me the name of another doctor who might end up to be a better fit for him.
I am curious to know if anyone is taking a daily dose of buprenorphine or methadone that is equivalent to 80mg of oxycodone?
About 1 mg sublingual. See this chart, you will need to do some simple calculations to do the comparison.
My experience has been that most doctors are total d*icks when it comes to believing their patients need opiate's. I had to find a pain management specialist. Do you have those where you are? I'm on 10mg Hydrocodone/acetaminophen, 4-6 times a day as needed. I've never needed more, and my RLS is well controlled until I forget to take a dose and then I remember for about 45 minutes what pure hell it was not to have my meds. My RLS started just in my legs, and for a few hours in the early evening. Back then, I took the usual meds. It has progressed over the years to 24/7, and even affect the back of my arms above the elbows. I had to jump through serious hoops and tests in order to get to Pain Management, and then to show my doc all the clinical research and papers from reputable medical institutions. I hope your friend persists. It's worth all the frustration and anger and tears to finally get relief. Your friend might not need such a large dose if he's put on a regular dosing schedule. Pain mgt isn't a free ticket to the Rx. It's a monthly appointment and random blood and urine tests to check for abuse and your kidney function. If you're non-compliant they will assume you don't need the help.
I know what you mean. I think my friend lives with some fear that he will be abandoned by doctors. Then what?
I assume you are referring to Dr. Buchfurher? He's running a trial with Nidra for their TOMAC bands that I'm participating in. I've spoken with him once so far and he seemed reasonably easy to deal with. Maybe he's got less time for patients now that he is running this study....
I was thinking about this the other day. I wonder who controls the data and findings of this joint venture. Nidra has every financial incentive to not let any negative findings get published. They've already received FDA approval for the device. I'm guessing Dr B. will be more like a consultant for Nidra with a NDA involved. Maybe I'm way off base. Anyways, keep us updated on your progress.
Interesting thought. I have seen Dr. B a handful of times. He was helping me navigate Ropinirole withdrawal. But because I couldn’t tolerate opiates he told me I was in the 3% he couldn’t help. I ended up getting of Ropinirole on my own. This was a few years ago. I found him attentive and caring although there was a side to him that was a bit condescending.
I don't think his dosage is out of hand. He is not taking the time release version so four dosages of 20mg throughout a 24 hour period is just above the average dose. I take 15mg of the extended release oxytocin twice daily which probably comes close to his total dosage when all is said and done.Whatever it takes to get relief. I get the need to want to switch to something like buprenorphine that works well and doesn't really have a stigma attached to it. Everyone gets all googly eyed when they hear that you are taking Oxycodone or Oxycontin. The same people wouldn't batt an eye if they heard you were taking 2mg buprenorphine. It's frustrating.
Your words are reassuring ziggypiggy. Whatever it takes to get relief is right! I understand that oxycodone has caused deaths and hence has some fear associated with it but some might feel that relentless RLS is worse than death. One of the reasons my friend went to see Dr. B was to switch to buprenorphine or methadone. I’m hoping he and Dr B can repair their communication and this can happen.
Anyone else a rapid opiate metabolizer?
looking for a neurologist 
Can't reach Prof Walker
Update Dr Winkleman- Buprenorphine 
Neurologist post update for RLS
