What To Do?

Use this forum to discuss any issues associated with Augmentation
timphillips
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Joined: Fri Apr 21, 2017 7:50 pm

What To Do?

Postby timphillips » Fri Apr 21, 2017 8:52 pm

I am new to the RLS Foundation but not to the disease. I am writing on the Board hoping to find some advice and guidance from those of you with more experience. I will try to be brief, here's my story....

I have had RLS since I was a teenager and I am now 53. I have always been against taking medication as feel your body is sending signals that should not be masked. Problems should be treated naturally with rest, diet and exercise. Finally, about 12 years ago after years of sleepless nights, I saw a neurologist who prescribed 0.125 mg of Mirapex. It saved me. I could sleep continuously for 7-8 hours. However, you all know the story... dosage levels increased, augmentation developed and at 1.5 mg for at least the past 5 years, the symptoms are getting worse.

I have two questions. First, my neurologist never discussed augmentation with me nor did he express concern when his prescribed dosage exceeded maximum recommended levels. Over the past 12 years I only recall 3 or 4 actual office visits. Several times my dosage was increased over the phone. I recall one visit where I described the RL intensity and concern about the type of drugs I was taking. His comment was "you gotta sleep, right?" After reading through numerous articles it seems clear to me my doctor has let me down. Information about augmentation associated with dopamine agonist medication was available in 2007. I am now faced with a horrific challenge of getting off the medication that will cause mental, physical and financial stress to me and my family. Is my neurologist at all responsible for my situation?
Second, what do you recommend as a course of action moving forward? What methods of transition do you think will work best?
Thank you for reading my story and for you response in advance,

ViewsAskew
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Re: What To Do?

Postby ViewsAskew » Fri Apr 21, 2017 10:39 pm

Your story hits home - it is my story. And hundreds, if not thousands, of others, who have come here.

Augmentation was actually known about in the late 1990s - but you had to be reading obscure journals. When I was treated in 2003 - after 20 years of trying to live with the sleeplessness - I augmented and my neuro, who stated he was trained by the best at the Mayo Clinic, just made it worse.

Like you, and most of us here, I had to teach myself and then work hard to find people who could help me. 12 years later, we still hear this story all too often. I cannot say if the neuros involved are responsible; I seem to think they should know about it, but I have read that it takes 15 years for newly identified medical info to become common knowledge among medical personnel. We are about at that point now. So, maybe I was expecting too much.

There are two basic options when augmentation has taken over your life. The first is what Johns Hopkins doctors do. You taper off then stop and go through withdrawal of all meds for about ten days. Then they start using other medications to treat the symptoms. The second method is what Dr. Buchfuhrer and some others do; they use an opioid, such as methadone, to get through the 5-20 day washout period when you stop the pramipexole (or other dopaminergic). Once through it, they either try another medication, or keep you on the opioid.

People here have done both. I used the second method. EeFall, a longtime member, used the first. Both work, but the first method requires you to take off work or not need to do much for the first ten days, as the RLS worsens significantly at first when you withdraw the dopaminergic. The second is getting harder because of the war on opioid addiction - many doctors will not use this method now.

Hope this helps.
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.

Rustsmith
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Re: What To Do?

Postby Rustsmith » Fri Apr 21, 2017 10:58 pm

Tim, welcome to the board and sorry that you found it necessary to come here.

Here is my personal opinion to your question of whether your neurologist is responsible for your current situation. I think that he/she got you into this, but almost certainly had no idea of what was happening. Although information about augmentation has been around for a long time, a huge number of physicians still do not know about it and that could easily include a majority of the general practice neurologists who should probably know better by now. The older ones probably spend their continuing education time on topics that are less mundane than the proper treatment of RLS. After all, RLS isn't life threatening like many other neurological conditions.

So, where do you go from here? First and foremost you need to find a doctor who is familiar with treating RLS patients who are currently augmented on a dopamine agonist. If you get to one of the Foundation's Quality Care Centers, that you be your best bet. If not, then you need to start doing your research. You can try contacting the Foundation Support Group Leader for your area. You can also try contacting any local neurologists who advertise that the specialize in movement disorders since these are more likely to know what to do. As a last resort, you can try to find a doctor who would be willing to work with you and learn what needs to be done. There are documents available from the Foundation to guide you and your doctor, if that is the route that you have to go. But that should be a last resort. It would be far better to find a doctor with experience in treating augmentation.

As for getting off of pramipexole, you have a difficult road ahead of you. There are two approaches, one involves quitting cold turkey and the other requires the use of a strong opioid to cover the dopamine withdrawal symptoms. Since you are taking such a high dose of pramipexole, you would probably need to reduce your dose so that you could avoid the possibility of DAWS (dopamine agonist withdrawal syndrome), which can cause permanent damage in the few people who have a susceptibility to it. Cutting your dose is going result in poor or no sleep during the process. Then when you get to a lower dose (maybe 0.5 mg), your doctor simply has you stop the pramipexole. Unfortunately, this will mean no sleep for around a week. The exact timing varies from person to person, but you then slowly start to get increasing amounts of sleep each night. If you search our past discussions, you will find reports from a number of our members who have gone through the process (for example the Quitting Neupro Cold Turkey thread in the Prescription Medications forum). I should also mention at this point that the doctors at Johns Hopkins prefer this method of quitting. They feel that this approach allows your body to reset itself back to your normal condition, even if the process is close to torture.

The second approach requires your doctor to prescribe a strong opioid to cover the DA withdrawal symptoms. These days, many doctors are very hesitant to prescribe opioids, so this alone presents a challenge. In my case, I was fortunate that this is the approach that my doctor agreed to let me use. I was taking 1mg pramipexole per day and switched to 5mg of methadone. I still take 0.25mg pramipexole for my PLMS, but I made the change in one day. The day before it was 1 mg pramipexole and the next I was taking methadone and the lower dose of pramipexole. I felt so much better that first day, that I slept longer than I had for months. Of course, there is the potential future issue that quitting methadone, which is also very difficult. However, my RLS is so severe that my doctor and I knew that I was going to be on an opioid anyway, so the idea of a cold turkey reset simply didn't make much sense for me. But your situation could be different.

The decision of which way to go is one that you and your doctor need to make. You need to be fully aware of the issues of both approaches since both have advantages as well as some significant disadvantages.

One last comment, if you are located so that you could get to the Quality Care Center in Houston, they are just starting a clinical trial of a medication to treat augmentation by blocking one type of dopamine receptor in the brain. It might be worth investigating if that sort of thing interests you. Dr Ondo is running the program and is one of the leading experts on the treatment of RLS.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

timphillips
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Joined: Fri Apr 21, 2017 7:50 pm

Re: What To Do?

Postby timphillips » Sat Apr 22, 2017 4:36 am

Thanks for your replies. It helps me get a better understanding of what is ahead of me and possible directions to take.

Back to my first question, do you think if my neurologist for the past 12 years is listed on the rls.org site as a healthcare provider (one of only three for my state) there is more liability than a general neurological practitioner?

Does the Foundation do credential checks prior to listing a name on the site? Does the doctor authorize the Foundation prior to listing their name on the site? And, by giving authorization, isn't the doctor indicating they are an expert in the field of RLS?

I am a licensed professional engineer. I find it hard to believe that medical specialty professionals get a 15 year grace period.

I realize these are questions you can't answer. I'm venting in a place where maybe someone other than a few close to me may notice.

Rustsmith
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Re: What To Do?

Postby Rustsmith » Sat Apr 22, 2017 12:55 pm

Tim, I don't know how to answer your questions about how a doctor gets listed on the website. My only suggestion would be to give the Foundation office a call and ask. The office staff is very friendly and wants to help, so don't think that you would be bothering them.

I am also a PE and am continually amazed at the difference between the aggressiveness of the state PE registration boards to investigate and prosecute errors by engineers compared to the unwillingness of the various state bars and medical boards to suspend the licenses of their members. Just about all professions that have registration of some form also have requirements for continuing education. One of the problems that I see is the prevalence of vacation type education programs for doctors compared to what I have seen offered to engineers. Their school is in someplace like Hawaii, Orlando or Yellowstone and ours are taken online. Many doctors are diligent and attend conferences that help, but too many aren't really interested in that. Which brings me back to the quote from Dear Abby to remember that "half of the doctors graduated in the bottom half of their class".

I do not know, but I suspect that the potentially a majority of our members have "fired" at least one doctor for problems with the treatment (or non-treatment) of their RLS. I had a neurologist who failed to even diagnose my severe RLS for five years despite multiple complaints about sleep and what I now know was movement urges. When I was finally diagnosed by another doctor, she didn't seem too interested or concerned that she had totally missed a diagnosis that was within her specialty.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

stjohnh
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Re: What To Do?

Postby stjohnh » Sat Apr 22, 2017 1:34 pm

timphillips wrote:Back to my first question, do you think if my neurologist for the past 12 years is listed on the rls.org site as a healthcare provider (one of only three for my state) there is more liability than a general neurological practitioner?...


Tim, I'm a retired doctor, internal medicine. Concerning your current neurologist, no he does not have greater liability (assuming you are referring to medical malpractice) than a general neurologist. On the other hand, did your current neurologist do a poor job and let you down? Absolutely. Time to get another doc.

Medical boards do a variable job of regulating doctors, state by state effectiveness varies a lot. For most doctors the threat of lawsuits by patients is a much bigger worry than action by the medical boards.
Blessings,
Holland

timphillips
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Re: What To Do?

Postby timphillips » Sat Apr 22, 2017 3:47 pm

I have an appointment with my neurologist on Tuesday morning. On Monday I plan to visit the office to obtain my medical records which will hopefully show appointment dates, levels of prescribed medication and dates the medication level was increased.

At the meeting I would like to have documentation available to show:

1. My prescription of 1.5 mg of Pramipexole per day exceeds the maximum recommended limit.

2. The significant published literature that discusses Augmentation and the problems with taking a dopamine agonist such as Pramipexole.

I can probably find this information myself but I am assuming you all with more experience in this area can point me to better sources.

Thanks for all your comments and advice. It really does help.

Rustsmith
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Re: What To Do?

Postby Rustsmith » Sat Apr 22, 2017 6:27 pm

Tim, your first stop for documentation and the one that you can acquire documents the quickest will be the Foundation website's Members section. They have four different documents that specifically deal with augmentation and loads of other very useful info. You have to be a member of the foundation to access this section of their website, but you can join online and it only costs $35.

Another valuable resource is the book "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Lee. It is available from Amazon for $30. Be sure to purchase the Second Edition. Although the book was written for doctors, almost all of it is easily understood by those of us who do not have a medical education.

Finally, if you are really adventurous, you can try searching the research literature with Google Scholar for words like Augmentation or for the names of the primary RLS researchers, like Allen, Trenkwalder or García-Borreguero. For this, be sure to use Google Scholar and not plain Google.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: What To Do?

Postby ViewsAskew » Sat Apr 22, 2017 8:22 pm

In the past, the Foundation simply listed any doctor who wanted to be listed and stated they had familiarity with RLS. There was no vetting involved. My knowledge is of the process around 2005 - I do not know what it is now. I asked the same question you are asking when I went through what you are going through. I thought about legal recourse - I lost my company, my ability to work, my relationships, etc. My life was ruined for a few years. I decided it was more important to find a way forward than to focus on the past as I was in my early forties and had a whole lot of life to figure out.

Per the 15 year comment - I am not implying it is right or that anyone allows it, just that a study found it to be so. My guess - after 25 years in my field - is that this is true in most fields. Once we graduate, all of our info is out of date - immediately. As Steve noted, some professions require more post-graduation education than others. But, as someone who has to provide evidence of my education to maintain my credentials, I am still not completely up to date and often find information that I wasn't aware of when it came out 1-10 years ago. I teach at a University, so I tend to be more up-to-date than most - and I still fail.
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.

badnights
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Re: What To Do?

Postby badnights » Tue Apr 25, 2017 7:24 am

In my signature line is a link to a post that contains links to information on augmentation and iron.

One of the links leads to a paper by Buchfuhrer that was published in a medical journal and recommends maximum daily doses for RLS/WED of 0.25 pramipexole and 1 mg ropinirole. Highlight that part and bring the whole paper to him. Be aware that other published guidelines for RLS/WED allow much higher doses - not everyone is in agreement on this point. Your neuro may say "who is this random guy" but you can tell him that Buchfuhrer was one of the authors of the original Mayo Clinic algorithm for treating RLS/WED and has a lot of clinical experience.

For augmentation, Steve has pointed you to some good resources. I have instructions for accessing the Foundation's publications, including the Medical Bulletin for healthcare providers, which would be a good one to give him. Please also (for instant gratification) see the "New" paper at the top of my list (in the post accessed through my signature). The Study Group's white paper and the extract from the book Steve mentioned are also important.

If you're concerned about your ferritin and your doctor needs convincing that 20 ng/ml is not enough for WED/RLS patients, there are more papers in the list that you can read.

Some advice for your visit: Highlight the relevant parts of the papers beforehand, and be prepared to leave them with him. He will not have time to read them while you sit there, so allow him the opportunity to read them afterward. Know what you've highlighted and arrange the papers in order of importance - if you could only show him one, which would it be? If two, which would be the second one? and so on. And when you present them, tell him that you've been researching the condition and that you've found this information, and you would like his opinion on it. You can tell him you have some concerns about your current treatment because changes in your symptoms seem to match what you're reading about. Don't tell him what he should do, and don't feel (or act) like you know more than he does. He may know how to interpret the information better than you can, so be respectful and genuinely interested in knowing what he thinks of the material you bring.

I hope with all my heart that he doesn't even need to read the stuff - that he knows right away that you should get off the pramipexole, that he knows he will have to treat a withdrawal. Good luck! and be prepared.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

timphillips
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Re: What To Do?

Postby timphillips » Tue Apr 25, 2017 8:39 pm

Thanks Badnights.

I just had my appointment with my doctor this morning. Although I did not read your post until this afternoon, oddly enough I would say I followed your advice almost exactly. I brought with me the article by the IRLSSG "White Paper Summary of Recommendations..." 2015, several publications from the RLS Foundation and an article published from 2003 about "Pramipexole in the Management of RLS". He acted like non of it mattered, like he had never of it. I showed him the Augmentation Treatment Algorithm and he acted like he had never seen it before. He commented several times that it was poorly written. He had never heard of Mark Buchfuhrer despite the fact he did his residency at the Stanford Sleep Center from 1991 to 1993. His argument to everything is that everyone is different you can't treat everyone the same. When I mentioned that I was experiencing RLS early in the day he suggested that I could take 1.5 mg at different times of the day - that I could take up to 4.5 mg in a day. I said I was concerned about augmentation and referenced the RLS Foundation's "Medications and RLS Patient Guide" limit of 0.5 mg. He blew it off. His comment was something like "and there is more to come out about that..." I got the strong impression that he does not read or pay attention to research or published information about RLS. My wife was at the meeting and she got the same feeling. I asked the front desk if the office sees lots of RLS patients, she said yes "tons" of RLS patients, both doctors in the practice.

In the end I said I believe I have augmentation from the dopamine agonist and I want to get off it.

After pulling my records I was surprised to find out my first visit was in 2010. Both my wife and I thought it had been much longer. My initial dosage of Mirapex was 0.25 but within a year I was at 1.0 mg. I have been at 1.5 mg for the last 5 years. Until today I had a total of three visits to his office.

During the past three night days I have been able to reduce the pramipexole to 1.0 mg taken with 300 mg of gabapentin and a long lasting iron supplement.

My plan is to find another doc and in the mean time increase the gabapentin to 600 mg and try to get the pramipexole down to 0.25 - 0.5 mg. Hopefully the other doc will have a long term solution.

stjohnh
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Re: What To Do?

Postby stjohnh » Tue Apr 25, 2017 10:35 pm

timphillips wrote:My plan is to find another doc and in the mean time increase the gabapentin to 600 mg and try to get the pramipexole down to 0.25 - 0.5 mg. Hopefully the other doc will have a long term solution.


Sounds like a good plan. Taking kratom along with your other meds will likely make it easier (not easy, but easier) to get your pramipexole dose down.

I augmented on pramipexole, switched to Neupro, got rashes, stopped Neupro, washed out the DA from my system (a truly horrible experience), tried gabapentin (zombie reaction at 300mg), then restarted pramipexole at 0.125 mg. Spent a couple of months juggling different doses of gabapentin, kratom and marijuana along with the pramipexole. Now have been 6 months or so on low dose pramipexole with kratom (makes it possible to get fair relief with only low dose pramipexole) plus edible marijuana ( makes sleeping more consistent) and 50 mg gabapentin (helps sleep quality). No signs of augmentation so far. I also take iron 3 times daily.
Blessings,
Holland

badnights
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Re: What To Do?

Postby badnights » Wed Apr 26, 2017 6:03 am

You definitely need a new doctor. I support you 100% in your search! well, morally anyway. I can cheer you on enthusiastically. Do you live near any of the Foundation's Quality Care Centers? You can be sure of getting knowledgeable care at them. That dude you're seeing would never have gotten accredited if he had applied.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

legsbestill
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Re: What To Do?

Postby legsbestill » Wed Apr 26, 2017 12:42 pm

He said you could take 4.5mg of pramipexole per day??? That is nothing short of astounding. 1.5mg is far too high and he should not have prescribed that for you - but to encourage you to go to 4.5 per day - I am speachless.

You definitely need to get a new doctor. Even accounting for the widespread levels of ignorance concerning rls within the medical profession that seems atrocious. Most General Practitioners would know not to go beyond 1.5mg daily of pramipexole and this guy is a consultant neurologist??? Were you experiencing any compulsive behaviour (gambling, shopping etc)?

I came off 1.5mg last year. I had been taking mirapexin (pramipexole) for about 10 years and at 1.5mg for about 3 years. I titrated down over a period of weeks and I did not start to experience significant rls symptoms until I was down to about 0.8mg. After that it turned into a nightmare for which, it appears from your first post, you are well prepared. I would second Holland's suggestion of using kratom to help with the withdrawal - it might take the edge off the worst. If I were to go through it again I would definitely look for opiates to help me through. In addition to withdrawing from pramipexole last year, I also came off oxycontin (which I started a few months after I washed out the pramipexole as the rls continued troublesome). Coming off oxycontin is hard but it was as a walk in the park by comparison with withdrawing from pramipexole.

I know you were looking for some indication of whether you could look to your neurologist for some compensation for the difficult times you are facing into as a result of the over-prescribing of the drug and I can see why on the specific facts of your case (as an indication, in my own case, my GP - who on his own admission knows absolutely nothing about rls - became anxious about the amount of mirapexin I was taking and referred me back to my consultant who immediately and unequivocally instructed me to reduce my dose and take a 'drug holiday' - I don't particularly rate my consultant when it comes to rls but she did have at least that basic knowledge).

However, if the law on professional negligence in the US is anything like here (Ireland), it is particularly difficult to establish negligence against a medical practitioner (more difficult than for example against an engineer). I appreciate that many doctors live in a state of anxiety concerning the prospect of a claim. I suspect that this has more to do with the large number of claims that are notified and are dealt with by insurance companies. However, the number of claims that are actually upheld in court does not justify their apprehension. For a disgruntled patient actually to win a disputed claim is not straightforward. In your case there may also be problems with causation of loss and in relation to the type of loss you wish to claim for. However, if I were in your shoes, I would be so angry about my treatment (particularly given his responses in your final interview) that I would most probably fire off an angry letter and might even go so far as to discuss the situation with a lawyer and send one formal letter just to unsettle him. I would not go further than that though.

I should add that although it is very hard to stop pramipexole, it feels absolutely great to be off it. I wish you every success. I hope you keep posting. It will be interesting to hear how you get on.

legsbestill
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Re: What To Do?

Postby legsbestill » Thu Apr 27, 2017 4:17 pm

Tim, I have been pondering your situation over the last couple of days. I cannot get over that your consultant neurologist stated that you could go up to 4.5 mg pramipexole. From what you describe he did this in face of considerable information you provided to him concerning the appropriate upper limit for pramipexole in rls. He not only gave you the wrong advice but he did so tenaciously and in face of documentary evidence to the contrary.

In giving this advice he is also compounding a problem which he contributed to in a number of ways. First, he started you on .125mg mirapexin. This seems a very high level to start on - my starting dose was half a .088 tablet and that worked for nearly six months. Then, he raised your dose repeatedly, apparently without any consideration of the dangers, to a much too high dose and without warning of the potential side effects or dangers of augmentation.

The difficulty you face at present is that the only loss you have suffered so far is the exacerbation of rls you are experiencing due to augmentation (I am assuming that you have not been unduly troubled with the side effects that such a large dose of dopamine agonists can cause). The big loss - the trauma of coming off the dopamine agonist after such a comparatively high dose - is yet to be experienced, as is any loss associated with that trauma, for example loss of work hours and difficulty managing domestic affairs.

To protect your position, you might consider writing down a note of your treatment to date, everything that was said at the final meeting by the neurologist and a summary of your understanding of what he was recommending for your continued treatment. You could then send that to him asking him to confirm whether it represents an accurate note of his treatment of you in the past and his advice for your continuing treatment.

Depending upon his response, I would be inclined to follow up with a letter stating that it is your understanding that as a result of the treatment, you have augmented unnecessarily on the dopamine agonist, an outcome that will probably result in considerable financial implications for you as well as pain and suffering and trauma and that if you follow his latest recommendations, this will further exacerbate the existing problem. It would be interesting to see what his response would be at that stage. At the minimum it will give him pause for thought with his next rls patient. Given that his practice seems to be overburdened with people suffering from rls, this would be no bad thing. At a less altruistic level it could set up a more straightforward route to visiting any financial loss you suffer onto him. Though I should stress this will depend upon the legal framework within which such a claim can be brought and I just don''t know what that is the U.S.


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