Second opinion w Dr Buchfuhrer

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lhoff12085
Posts: 66
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Second opinion w Dr Buchfuhrer

Post by lhoff12085 »

I've been having increasing problems during the day for many months but my doctor is extremely hesitant to up my dose of methadone. I have another appointment w him in June but all of sudden thought I could possibly have a online call w perhaps Dr Buckfuhrer to review my case and get a second opinion. With the virus, it's become much more prevalent for doctors to do that.

I'm on 5mg/2xday of methadone and 600mg/day of Horizant. I've tried taking an extra methadone but with no improvement and separately an extra Horizant also w no improvement. I also have levo-carbidopa (Sinemet) which I rarely take unless I travel, and that does help but I know it can make RLS worse if taken too often so it's not a good solution. I'm wondering if a combination with another opioid is an option since I believe some opioids work differently than others.

I'd appreciate what others think of my doing that (call w Dr B) and if he is the one you'd recommend. BTW I think my Dr is good but I don't necessarily think he's up on the latest thinking on RLS. Also, have others had the issue w RLS during the day and not during the night?

Thanks....

lhoff12085
Posts: 66
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: Second opinion w Dr Buckfuhrer

Post by lhoff12085 »

I mean Levadopa (Sinemet) NOT Lyrica!

Moderator's note: I corrected your previous post, replacing Lyrica wtih levo-carbidopa (Sinemet).

Polar Bear
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Re: Second opinion w Dr Buckfuhrer

Post by Polar Bear »

I haven't heard of anyone having an online call with Dr B but I certainly wouldn't let that stop me asking for one.
An alternative would be to email him. He is very speedy with his responses.
Dr Bs email address is - somno@verizon.net
And at a time my GP followed what Dr B suggested in a responding email.

Have you tried Lryica yet along with your opioid. It works for me i.e. Lyrica & codeine, not perfect but perfect enough for me compared to how I used to be.

With regard to day time rls symptoms, without adequate medication I would suffer 24/7.
I have never had daytime symptoms with a symptom free night.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Second opinion w Dr Buckfuhrer

Post by ViewsAskew »

I am relatively sure he does do some calls, but I think that when it comes to methadone, he won't prescribe that way.

I'd email him first and ask his opinion. It might be enough information for you to make a better decision.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

lhoff12085
Posts: 66
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: Second opinion w Dr Buckfuhrer

Post by lhoff12085 »

Thanks for the responses. I don't need him to prescribe - my dr does that - I need a second opinion to take along w me when I meet w my dr. I'm thinking I need an additional drug, not an increase in my methadone, and my dr doesn't seem to understand the options. I don't think he's up on recent treatments and is focused on his ability to prescribe an increase in methadone - not sure why but possibly he invites state scrutiny which none of them want.

lhoff12085
Posts: 66
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: Second opinion w Dr Buckfuhrer

Post by lhoff12085 »

So I tried to call and his secretary said I had to see him face-to-face before he would do either a phone consult or video call. Honestly. I will try to email him. I preferred not to do that bc it's less effective....thanks for giving me his email Better.

ViewsAskew
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Re: Second opinion w Dr Buckfuhrer

Post by ViewsAskew »

Good to know how it works! I think they get extremely overprotective of themselves (and their medical license, I imagine). Attorneys must have them terrified, too.

Hope the email option gives you the info you need. When I did it in 2004 or so, he answered and I took that email to my doc. My doc listened. Another time, Dr. B answered and I took to a different doc (around 2010) and the doc called him and he answered, so they worked it out. He is pretty awesome that way.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

lhoff12085
Posts: 66
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: Second opinion w Dr Buckfuhrer

Post by lhoff12085 »

Betty asked if I'd tried Lyrica and I haven't. That may be a possibility that I'm not aware of. I will let you all know if I receive a reply from Dr B to my email. Maybe he'll talk to me after he sees my email - never know. I was thinking he may not be very busy now w everything shut down. Thanks again Ann and Betty.

badnights
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Re: Second opinion w Dr Buckfuhrer

Post by badnights »

Probably make more sense to increase your Horizant dose than add Lyrica to the mix - they're the same class of medication.

But see what Dr B says in the email. If you can get in to see him with a video consult, that would be great, but I don't know if he's doing that. It would certainly be worth it for you.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

lhoff12085
Posts: 66
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: Second opinion w Dr Buckfuhrer

Post by lhoff12085 »

Well...he got back to me which I appreciate, but offered to do a consult w my doctor. I'm hesitant to ask my doctor bc it will read that I don't think he knows what he's doing and I think he prides himself on being an expert. Ugh. It feels like it's all around liability but I was only asking for a discussion around options. I'll have to think about it.

As for the Horizant, I've tried doubling the dose and I get no relief. I know from RLS webinars that different opioids work on different areas of the brain so I wonder if some combination would help. If anyone is on a combination, I'm interested in knowing what the combination is.

lhoff12085
Posts: 66
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: Second opinion w Dr Buckfuhrer

Post by lhoff12085 »

Well, glad I clarified w Dr B what he'd said. He IS willing to consult w me! I'm trying to schedule now but his admin needs his permission. I'll let you know what happens....

ViewsAskew
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Re: Second opinion w Dr Buchfuhrer

Post by ViewsAskew »

I had one of these docs who thought she was an expert. She did listen...but was never on my side. Our relationship was tense and she kept fighting the resolution. Ultimately, it didn't work out.

Glad to hear that you clarified and that he will consult with you.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

QyX
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Location: Berlin / Germany

Re: Second opinion w Dr Buckfuhrer

Post by QyX »

lhoff12085 wrote:
As for the Horizant, I've tried doubling the dose and I get no relief. I know from RLS webinars that different opioids work on different areas of the brain so I wonder if some combination would help. If anyone is on a combination, I'm interested in knowing what the combination is.
I am on a combination of 3 different strong opioids: Morphine, Oxycodone, Hydromorphone. How it came to be this way is a longer story and I will explain it later but the main reason why I am doing this is because one or a combination of two opioids was not effective enough anymore.

We started with Oxycodone 5 - 5 per day and reached a daily average dose of 80 mg 4 months later. That dose would equal to 160 mg Morphine. Today, 7 years later I still about the same daily dose, just split over those 3 different opioids mentioned above. So on Oxycodone, I had two problematic side effects: my eyes got really dry and additionally Oxycodone had stimulating properties and therefore I couldn't sleep.

Hydromorphone was already much better but it still had alerting properties which is why I wanted to try Morphine, too. Morphine worked great for a few months but it lost its hypnotic properties after only 3 months but I kept Morphine since it worked best from all the opioids I had tried so far.

A few years later, I developed tolerance issues which made me go back to Oxycodone. But after 2 months on Oxycodone, I developed tolerance again and to avoid increasing the total dose, I started combining them which worked great and is fully supported by my doctor. Morphine and Oxycodone I take daily, Hydromorphone I only take 3-4 times per week. If I don't take Hydromorphone, my average dose starts to go up. One days where I don't take Hydromorphone, I sometimes take more Morphine and sometimes more Oxycodone so that I never got too used to any one substance.

lhoff12085
Posts: 66
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: Second opinion w Dr Buchfuhrer

Post by lhoff12085 »

Does your doctor understand the science behind combining doses or is it rather trying different things? I've pushed my doctor and he seems stuck on methadone only. I've tried taking an extra methadone but it doesn't do anything. I will use your example when I see him and see how he reacts. I'm wondering if I've got a tolerance issue and whether switching would help. I'm going to ask the RLS Foundation if they will research and publish on combining opioids and tolerance. You're always a huge help!

QyX
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Re: Second opinion w Dr Buchfuhrer

Post by QyX »

I don't think it is tolerance in your case. For some people certain opioids work just better than others. The science behind it is that while opioids all work similar, they still have different receptor profiles and can be metabolised in different ways and produce different metabolites who themselves sometimes have or not have relevant pharmacological (side) effects.

What I would do in your case is to see if you can get a prescription for Oxycodone instead of Methadone and try it for one month and then evaluate the situation again. Oxycodone and Methadone are the two opioids with the most research available for RLS. One version of Oxycodone is even approved officially for RLS in Germany which means that there are quite a few studies out there who have proven its effectiveness for RLS.

If you use the search function in this forum, you should be able to find those studies or at least links to them here in the forum.

Methadone is normally hugely effective for RLS and the issue most people have with it are not the lack of effectiveness for RLS but side effects like depression, prolonged Qtc interval, impotence, weight gain, fatigue and insomnia triggered by it.

Additionally it is also not reasonable to expect that opioids alone can treat severe RLS alone. I need quite a bit of additional medication to manage my symptoms. Opioids alone wouldn't do it for me.

Also: when you are on 10 mg of Methadone per day and add an extra 5 which would mean a total of 15 mg, it is relatively still not that much. It could be the case that you need much higher doses. 15 mg of Methadone roughly equal 60 mg of Morphine when taking for a longer period of time. My opioid dose is equivalent to 160 - 180 mg of Morphine and I still need Oxcarbazepine 600 mg (an antiepileptic), iron tablets, CBD and THC in form of oil and medical marijuana to manage my symptoms.

Also: Methadone is almost never combined with other opioids. The Methadone is often so dominant that unless you give the other opioid in much higher doses, the Methadone will still dominate the effect and might impede the effects of the other opioid. So to properly assess your problem, the first thing would be to check if a higher dose of Methadone is more effective but if not, it really would make sense to try Oxycodone. There is a lot of evidence out there that supports the use of Oxycodone for RLS so when your doctor is willing to prescribe a drug who is arguably even more problematic than Oxycodone, I see the potential that he might be convinced to give it a try when it is clear that the Methadone is not working.

With Methadone, there are also people who metabolise it much faster (or slower) than the average person. So it could be the case that you are metabolising Methadone way faster than the average person and therefore have only very limited effects. But this is something you need to speak with your doctor about and he really should know all these things. Most doctors would increase the Methadone dose until there are either relevant side effects or it becomes clear that the drug is just not working for you. At your current dose, it is really hard to tell what is even going on and I can see why he doesn't want to give up on the Methadone just yet, even though I believe Methadone is a poor choice for a first line opioid, given all its potential for problematic side effect which are less relevant with the morphine type opioids.

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