Has anyone seen Dr. Buchfuhrer He is a great Dr.
Dr. Buchfuhrer: Has anyone seen Dr... - Restless Legs Syn...
Dr. Buchfuhrer
Written by
Marvene1942
To view profiles and participate in discussions please or .
51 Replies
•
I can't afford to see him, but I believe he is amazing. I've written to him twice and got replies both times. I thought at first that it was not actually him, but now I believe it is.
Amazing that he can spend so much time and effort helping people.
WideBody• in reply to
What did you ask Dr. Buckfurer? Not trying to personal, did you learn anything you can share.
If you go to rlshelp.org you will be able to read hundreds of letters between Doctor B and patients. And write to him yourself.
I'm on record there!! But you won't recognise me!!
Ha ha!🤣
But I can figure out a few of our regulars!!
Hee hee!
I'm a bit giddy this evening!!
On holiday by the sea.😎
• in reply toMadlegs1
Its all that sea air, gone to your head. LOL
• in reply toWideBody
I asked him about taking gabapentin and pramipexole at the same time and if the gabapentin would help with withdrawal symptoms when weaning off the pramipexole.
He replied that it was OK, that gabapentin would help, but also said I would still get withdrawal symptoms when I reduced the pramipexole to zero.
It confirmed my idea that you don't have to stop taking a dopamine agonist before starting on gabapentin as many people seemed to be suggesting.
• in reply to
There are some members that do say to start taking Gabapentin while weaning off a DA. I think Jools is one who says that. 
I THINK i have suggested that too. but dont quote me on that, as it might have been on another group i have mentioned it. 
• in reply to
This a verbatim copy of Dr B's response to my email
"We often use combination therapy which can include gabapentin and a dopamine drug like pramipexole. The gabapentin should add significant RLS relief when the pramipexole does not fully control them. The concern about pramipexole is that it causes augmentation and getting off it is the best solution. Gabapentin may not always be sufficient to control RLS symptoms when stopping pramipexole."
In addition this is an excerpt from a credible article written by
Michael H Silber, MBChB, Professor of Neurology, Mayo Clinic College of Medicine 2019
"Alternatively, dopamine agonists can be discontinued and replaced with alpha-2-delta calcium channel ligands (algorithm 1). We typically introduce the new drug and increase the dose to an effective level before slowly reducing the dopamine agonist and discontinuing if at all possible. Some experts advocate a 10-day wash-out period before introducing the alpha-2-delta ligand in order to establish a baseline measure of disease severity, but this can result in increased RLS symptoms and profound insomnia during the wash-out period."
here's the link
uptodate.com/contents/treat...
• in reply to
I dont like the 10 day wash out, with taking no meds at all, I know some have done it and got through it, and some who have ended up in ER (A&E)
Parminter• in reply to
It's definitely him, but he signs so modestly, with initials in lower case, that you hardly notice it.
A brilliant, modest and compassionate doctor. Like another century.
I wish we could clone him.
Hi Marvene
Dr Buchfuhrer seems to be a real authority on RLS. Most doctors don’t know much about RLS but think they know everything. When I showed my doctor an impressive slide of Dr Buchfuhrer he glanced at it, remarked “Interesting “ and tossed it nonchalantly aside. I was not impressed
Stan
Get his book, Stanshear, (mentioned above), he will not be able to toss that aside! Arrogant!
That was disrespectful of that doctor. O one could help me and I stopped pramiprexole cold turkey and that caused me horror for months. I still have not gotten over it!in my 3rd month. Sad
All the Drs up here think taking a Opiate is not good or else they don’t believe it is good to take
I have written to him, like many others here. He always answers.
He has published many scientific papers with other top experts and written the definitive book (for practitioners) called 'Clinical Management of Restless Legs Syndrome'.
You can get the book on Amazon. It costs a fortune, but I managed to get a second-hand copy.
Thank you!!!!!
I bought mine on e-bay for $16.00
Oh you lucky thing! My postage cost more than that.
In desperation l e-mailed Dr B and to my amazement he replied. He was very helpful and seemed to understand my frustration at dealing with medical professionals that simply did not understand RLS.
He made some suggestions re medication and l took our correspondence to my GP for him to read.
Like others, my GP was very dismissive, saying something like “bloody Americans” think they know it all.
If nothing else it was wonderful to have a doctor acknowledging how difficult RLS can be and that it does impact people’s lives.
Just a word of advice if you are thinking of contacting Dr B. He is a bit of a stickler for properly composed correspondence and will not answer text speak etc.
There are two good medical text-books on RLS, one written by Doctor Buchfuhrer et al, and another by Doctor Garcia-Borreguera (of Madrid).
Nothing by an Englishman. Nada. Zilch.
So get Dr B's book and slap it on your doctor's desk.
Slap it on his head might get his attention lol
Give it a go! With my blessing.
Yes, I see him every 6 months and he is great!! My RLS was not controlled for 6 years until seeing doctor B March of 2019. Changed my life. Most compassionate doctor I have ever seen. If you have an opportunity to go see him I would definitely go.
I just ordered the book. I am 79 today. My children cannot remember a day I did not have this. I also have Fibromyalgia with the fire skin. Most clothes hurt when they touch. The really soft fabrics are not to bad and it’s not all over. Thank God.
• in reply toSassy-here
Happy Birthday .!
I saw him in March of last year he is great. I have been on Opiates ever since I think I am allergic to Opiates. They make me dizzy I have tried Methodone , OxyContin,Belbuca and Morphine. The Belbuca worked but the cost is really high $400.00 a month. I just can’t afford it.Insurance so far will not pay anything. I am at a standstill. When I was on the Belbuca I felt great no dizziness, Right now Dr Buchfuhrer is trying to get my insurance to pay part I hope he is successful.
• in reply toMarvene1942
I hope Dr B is successful with your insurance. i get dizzy from most of the meds, at times, or i get really drowsy. Not found any med that doesnt give me side effects, sometimes those side effects can be intense.
Marvene1942• in reply to
Yes the side effects are terrible but so is the RSL. Have you been to Dr B
• in reply toMarvene1942
No chance of me getting to see Dr B. unless he decided to come to the UK and do some RLS surgeries here.
If the $400. expensive drug is your cost WITH insurance, try calling the manufacturer and let them know you need assistance with cost. If the drug is $400 WITHOUT insurance coverage try having your Doc fill out an RX authorization for the med. HOPE one of those options helps.
Dr Buchfuhrer is trying to get auth from my rx insurance sure hope he can get one I called Belbuca office they said they can’t help me they didn’t even have a indigent program it is a new drug so no generic. It’s all about the money they make
It might take a week for prior authorization approval but it can be worth the wait. For me, most times the insurance co. approves the drug. Its all in what the doctor writes as why you need the drug. Also, some drug companies offer break in price if you call them directly. Hoping it works out for you.
That price is absolutely wicked. America is gouged rotten by Pharma.
We cannot get Belbuca here, (in South Africa), but Subutex (which contains 2mg bup) would cost me $70.
That is a lot for me, but nowhere near the $400 you mention.
Vote for candidates who want to control Pharma, because Pharma is controlling Washington right now.
Hi Marvene 1942
So sorry to hear that .
I sincerely I hope insurance comes to the party and pay some of it for you .
That is so wrong !
Just wondering what dose belbuca and is it sublingual which I believe is buprenorphine correct me if I’m wrong ?
Yes but it has something else I don’t have the box anymore Dr B told me that buprenorphine is too strong to take by itself I guess it only has a small amount of it in Belbuca. I don’t like taking morphine it’s not going for your body I take 1/2 of 15mgs in am and 1/2 in pm
Buprenophine is 2 mg which is a low dose or temgisic is still buprenrphine however really microdose at 0.2
Belbuca 150 sublingual I got a call from my Pharmacy and the insurance lowered my deductible to $368. The insurance and Drug Companies rule in USA. Too bad I hope one day the table is turned on them
• in reply toMarvene1942
So sorry Marvene, 
Marvene1942• in reply to
Thank you that medication is only for the rich
I saw Dr B in early January of this year and he has taken me cold turkey off Pramipexole and started me on Methodone 5 mg at 5 pm and presently taking 1/2 pill again an hour or so before bedtime. I have slept well until 4-5 hours later with restless, achey legs but don’t take more methodone. I get up move around and have been able to get back to sleep in an hour or so...
It took me a week to start on the methodone as I was so nervous about starting an opioid.. My husband who went to my appointment with me is very supportive. We had planned a Christmas trip to California ( I’m from the Midwest) with some of our children and realized I would only be an hour or so from his office and was able to get in... a big step for me..
I’ve suffered from RLS for many years although just put a name to it past few years. Oh, and Dr B said the Gabapentin would not work for me ( less than 2%) after having been on Pramipexole....was on pram for three years with augmentation. Took 4 .125 mg pills. Dr B was great.... haven’t gotten the bill yet!
Happy for you
I have Medicare I usually have to pay about $30.00 for me it’s all about the cost to fly to Los Angeles
• in reply toGrandmagoose
Thats interesting, Dr B saying the Gabapentin would not work for you after being on the prami and augmenting on it. Alot of people take Gabapentin when weaning off a DA along side a opiate to help with the withdrawals. I wonder if he was just referring that just for you, or in general. Dr. B is one of the best to see for RLS he knows his stuff. Anyone who gets to see him for treatment are very lucky.
Grandmagoose• in reply to
I was expecting him to put me on Gabapentin, so was really surprised he said this... I need to clarify this when I email him... I feel so grateful to have had the opportunity to see him...
Grandma, hi.
First, could you tell us why Dr B said the gabapentin would not work for you? (What does the less than 2% mean?).
Second, just a remark - I take 6mg methadone, which covers me all night 99.5 % of the time. But 5mg keeps me going only until about 2am. My point is that you do not have to double up to get more relief - the smallest increment may make all the difference.
Hi. Thank you for your response. I have just the 5 mg pills, so take 5 mg and then 1/2 pill or 2.5 mg at around 1 am. I need to get on the portal and report to Dr B how Im doing so will report back. Hoping I can decrease more after my first two weeks after stopping pramipexole.
I do need to clarify more with him, but my understanding was he felt after being on pramipexole and augmenting he felt there was only a 2% chance that gabapentin would help me.... will report back on that too....
Thank you.
If that is a general thing, then I would not do well on gabapentin either, because my case is somewhat similar to yours- although I was on pramipexole much longer, to terrifying effect.
I, like you, went from the ghastly pramipexole to methadone overnight. I started with 10mg methadone, then went down in steps every few nights until I reached my present 6mg.
I use the liquid, which is very easy to titrate. (I do not know how you would cut up little pills to get a dose like mine).
I have not heard of anyone else using the liquid methadone - I wonder why? It is just so easy to get a precise dose, tailormade to need and body-size. Perhaps it is because it is the same methadone that is handed out at addiction clinics, and it has bad (but silly) negative associations.
His office calls are not that much
Do you live quite near there, Marvene, or do you have to cross the continent?
Those who can afford it cross the planet to find a good doctor. We must be the most under-recognised patients who do this (or want to do it) because we get so little help near home.
I fly dowm
n as I live in Northern California 70 miles from Oregon on the coast. My son has a lot of free miles so he got me a ticket round trip then he takes me to the Dr. He lives in Los Angeles
Not what you're looking for?
You may also like...
Dr. Buchfuhrer
In my recent post, I forgot to ask how to email Dr. M. Buchfuhrer. I have had several so with him...
Dr. Buchfuhrer
Just got an appointment with Dr. Mark Buchfuhrer at the suggestion of a few of you. His office is...
Dr Winkleman Dr Buchfuhrer
Hi Restless Team
Just wondering what the difference in care is between the 2 specialist Dr...
Appointment with Dr. Buchfuhrer
Had first appointment with Dr. Buchfuhrer about ten days ago. He is very attentive, determined to...
Interacting with Dr. Buchfuhrer
I have suffered RLS for many years and am withdrawing from high doses of Pramipexole. Looking for...
Related Posts
Dr. Buchfuhrer Visit 
Dr Buchfuhrer is Awesome!
Q&A with Dr. Mark Buchfuhrer
Dr B? Moderation team
KaarinaAdministrator
