Second opinion w Dr Buchfuhrer

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

Re: Second opinion w Dr Buchfuhrer

Post by lhoff12085 »

Thanks - you've given me a lot to think about and discuss w my doctor. I see him in early June. I dread the discussion bc he's said many times that he either can't or won't increase the methadone dosage much - whatever that is. I'm not sure why that is. I have no idea what is considered "a lot" with methadone but from what you've said, I'm on a very low dose. I'm thinking he'd have to double it to help me since I've tried an extra 5mg and it hasn't helped much. I'd switch doctors but it's so hard to find any that understand RLS let alone will prescribe opioids. I feel like a common criminal.

I'm trying to get an appt w Dr. Buchfuhler but his admin hasn't gotten back to me and when I've called again, it either rings and rings or I finally was able to leave a message and have not gotten a call back. If need be, I'll let him know - hate to go that route though. I feel it's well worth getting a second opinion since he's an expert. Thanks again for taking the time to write.

QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Second opinion w Dr Buchfuhrer

Post by QyX »

Yes, I understand that it is a tough situation you are in right now. One way to approach your current doctor is to make clear that whatever he is doing right now, you are still having a considerable amount of symptoms and that he needs to do something. It is kind of up to him to come up with ideas, not you. You can also start taking iron tablets. There is no prescription necessary for those. Maybe they work, maybe they don't.

Then you can supplement your Methadone with Kratom. Kratom is actually quite potent. Your response to Kratom could give you a better understanding how you respond to opioids in general and you also should not expect that opioids alone will be able to manage your symptoms.

Yes, compared to my opioid dose, your opioid is low but relative to other RLS patients, my opioid dose is relatively high and and with the current anxiety and problems related to opioids, most doctors will not prescribe more than 90 mg of Morphine equivalent for non-cancer pain related problems.

But I totally agree that you have to see Dr. B. It doesn't seem like your current doctors fully appreciate your situation. I know this is difficult situation and it might take a while to resolve it. Anyway, with Kratom and iron tablets you would have two routes that you can explore by yourself until you see your doctor again.

ViewsAskew
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Location: Los Angeles

Re: Second opinion w Dr Buchfuhrer

Post by ViewsAskew »

The methadone dosage suggested for RLS patients is 5 to 30 mg. They do start to get a bit testy when you get to the 20-25 range, knowing that tolerance would cause in increase.
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 Buchfuhrer

Post by lhoff12085 »

I was wondering about that. I was going to check w our RLS literature but not sure it's in there. I need to be armed when I go in! Thank you!

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

Re: Second opinion w Dr Buchfuhrer

Post by lhoff12085 »

Seemed to have "lost" my previous note to QyX. Hmm. Thanks for all the info on opioids etc. It's very helpful. I have tried Kratom and find it's very helpful w calming me down when I feel symptoms coming on. It's potency can be intermittent though. My doctor had me stop taking iron bc my levels were good although he rechecks them every year. I haven't talked to my doctor about Kratom bc I'm afraid he'd freak out. You seem to have a terrific doctor who really works with you. I will let you know what happens at my appt. Thanks very much!

badnights
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Location: Northwest Territories, Canada

Re: Second opinion w Dr Buchfuhrer

Post by badnights »

QyX wrote: One way to approach your current doctor is to make clear that whatever he is doing right now, you are still having a considerable amount of symptoms and that he needs to do something. .......
Anyway, with Kratom and iron tablets you would have two routes that you can explore by yourself until you see your doctor again.
I wholeheartedly agree!
lhoff12085 wrote:My doctor had me stop taking iron bc my levels were good although he rechecks them every year.
Can you get the lab results for the last few years from him? It surprised me to realize it, but GPs don't always know how to interpret iron results in the context of WED/RLS. I had a GP put me on iron pills WAAAAY back when I first started problems, and then referred me on to an internist. The internist recommended I stop the iron because my "iron levels were fine". I don't have the other numbers, but my ferritin was in the 50's and within a few months of stopping, it was back in the 20s, where I think it was when I first started the iron. So, the internist didn't realize that 50's was not necessarily adequate for someone with WED/RLS (labs will report the result as normal if it's over 20) - and none of them realized that serum ferritin was not reflective of brain ferritin. The end of that sad story is that the internist put me on dopamine agonists, I augmented (augmentation is more likely if your ferritin is less than 75), and life has been hell ever since, whereas I probably could have been adequately "fixed" with nothing more than iron.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
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 Buchfuhrer

Post by lhoff12085 »

Interesting! He said he was worried about me storing too much iron. My labs are:
FERRITIN 99 ng/ml ( was 187 in 2017)
IRON TOTAL 165 mcg/dl ( was 145 in 2017)
% SATURATION 61 %(CALC) ( was 55 in 2017)

I'm not sure what I'm looking for but clearly the FERRITIN was much higher 2 years ago when I was still taking the iron. Any comments?

badnights
Moderator
Posts: 5721
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Second opinion w Dr Buchfuhrer

Post by badnights »

I don't know how to interpret that :(. Your serum iron (amount of iron in the liquid part of your blood) is borderline high, your saturation is high, but I don't know what it means.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
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 Buchfuhrer

Post by lhoff12085 »

I had my appt w Dr B. He was fabulous! It's amazing to talk to a doctor that knows RLS so well. I learned a lot. As for my iron, he said it was fine. The big difference w my Ferritin from 2017 to 2019 he suspects is bc Ferritin is "acute phase reactive" which essentially means it reacts to things such as having a cold or if my immune system is active, so can swing by large amounts. He went over my meds and is having me take a Horizant in the morning when I eat (bc Horizant metabolizes better w food). It is at its peak I believe in 6-8 hours so he wants to see if it helps me in the afternoon when I'm having trouble. I already take Horizant at dinner time. I've have been taking it for about a week and I think it's working pretty well. It makes me a little tired but if it works, I'll take the tradeoff. I can't say it makes a big difference but he said to give it a couple weeks. I also take Sinemet (Carbidopa/Levodopa) but rarely bc my doctor told me it can cause augmentation. I basically use it when I travel. He said I can safely use it up to 4 times a week w/o any problems. My doctor had told me that I need to take it BEFORE I have issues - which isn't really helpful bc I don't always know when I'm going to have trouble - but Dr B said that's not entirely true. He said I just should take more if I'm already having trouble. He wants to talk to me again in 2 months. One option he talked about rather than taking more methadone, is to take Belbuca. I hadn't heard of that but it's an opioid that's used like narcan to reverse a drug overdose. Therefore it's very safe to take and he's found it works well w methadone. Is anyone taking that??

I feel like I've got a plan for now and I'm grateful. We'll see what happens. Thanks for the support many of you have given me.

QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Second opinion w Dr Buchfuhrer

Post by QyX »

Belbuca is Buprenorphine. I kind of regret not trying it when I had the option to do so. I've been taking the more classic opioids like Oxycodone and Morphine from the almost the beginning but later, while I was still on a relative small dose, got offered to try Buprenorphine. That would have meant stopping the classic opioids first, wait 24 hours and then restart with Buprenorphine. I didn't wanna do that at the time but doing it now, after I've taken opioids for so many years already would have been even more unpleasant.

When Buprenorphine works it can be a perfect treatment for RLS. The main advantage it has is that it only needs to be taken once per day and is additionally much saver against overdose than the morphine-type opioids.

The reason I regret not trying Buprenorphine is that it also has antidepressant properties. I saw this drug make a real difference in a person with chronic depression that did not respond to any other treatment. It also nice that you only have to the drug once per day. Some people even only need to take it once every two days.

Anyway, should Buprenorphine not work, switching to a conventional opioid which is a voll mu-agonist like Methadone or the morphine-type opioids is easy. You wouldn't need to go through withdrawal like you would if you had started with classic opioids first.

Buprenorphine should be tried first it almost all RLS cases when an opioid is needed in my opinion. In certain cases, it might not be as effective as full mu-agonists but it wouldn't hurt to try but sadly many doctors lack experience with it and other doctors are afraid of stigmatising their patients when prescribing an opioid that is commonly used to treat people being dependent on opioids.

If you get Buprenorphine, I would be really curious to learn how it is working for you.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Second opinion w Dr Buchfuhrer

Post by ViewsAskew »

I think many of us have an incredible experience the first time we talk to him - for the first time, a doc knows more then we do, takes us seriously, is will to try whatever works, and he is up on the more current info. It is pretty awesome.
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 Buchfuhrer

Post by lhoff12085 »

I will let you know, QyX, if I do go on it. I'm seeing my doctor in June and have no idea how he'll react to it. He may not have any experience w it but I'm going to ask that he talk to Dr B if not. The extra Horizant isn't working which is too bad. Unfortunately, Dr B can't prescribe for me so I'll probably have to go through some iterations w my own doctor for awhile. Who knows what he'll suggest.

It really is an amazing experience to talk to someone who really knows about RLS. I'm so grateful he was willing to talk to me. To be continued...

QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Second opinion w Dr Buchfuhrer

Post by QyX »

Okay, too bad Dr. B. can't prescribe for you.

An additional thought: have you already looked into Kratom? It works like classic opioids and can be used to "boost" the effects of pharmaceutical opioids. I would say it approx. has the potential to be as effective as 10 - 20 mg of Oxycodone (5-10 mg Methadone) as long as you take enough.

Some people here in the forum posted about Kratom and are using it successfully as an alternative for classic opioids when their doctor is not willing to prescribe those. Even if you don't take it long-term, it would give you an idea if you theoretically would benefit from a higher Methadone / opioid dose.

Also: are you taking iron tablets or tried them in the past? I can't remember if you wrote about that.

My own experience is that it never was possible to cover all my RLS pain & movement symptoms with opioids alone. I am taking the antiepileptic Oxcarbazepine as a primary co-analgesic for RLS. Other antiepileptics either never worked (Gabapentin, Lyrica) or were not effective long-term (Carbamazepine). Maybe that could be an option if your doctor really doesn't want to increase your Methadone. However I have to say in the U.S. barely any doctor knows about the potential of Oxcarbazepine / Carbamazepine to treat RLS. When I used Carbamazepine initially, it worked so well that I was able to completely drop all opioids for 2 months but over the years I developed a tolerance for Carbamazepine and ultimately started to have paradox / adverse effects. Oxcarbazepine I tolerate much better but I would be really surprised if a doctor in the U.S. would use it for RLS. Even here in Europe it is rarely, if ever used for RLS.

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

Re: Second opinion w Dr Buchfuhrer

Post by lhoff12085 »

I actually have been taking it and it does help. It somewhat depends on what I get i.e. it's not always consistent in its potency. I find that regardless of the type I get. Is there a specific kind you get that you think is better? I found out about it here! I had no idea how it worked so thanks for that. As for iron, my doctor had me stop taking it a couple of years ago bc he was concerned about negative effects of taking too much. My ferritin levels are fine - Dr B confirmed that and agreed.

I've never heard of the drug you mentioned. I can mention it to my doctor and see if he chokes me. ;) Thanks for helping. Laura

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

Re: Second opinion w Dr Buchfuhrer

Post by lhoff12085 »

Qyx, One thing I'm sure you could help me with is I'm trying to find out when Horizant and methadone are at their max in my system. Is that the T-max? I haven't found any graphs or data on that and I know Dr B was trying to maximize their effectiveness in the afternoon for the first dose. Maybe I'm searching on the wrong thing but it seems tough to find. If you can figure this out, I'd appreciate it! Laura

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