Restless Legs Syndrome (RLS) Discussion Board

JoLyn, although Dr B has his offices in the LA area, he is also on the faculty of the Stanford Sleep Medicine Center, which is one of the RLS Foundation's Quality Care Clinics. I realize that Stanford is not part of the Kaiser network and that it is somewhat far from Sacramento, but many of us travel even further to see our RLS specialists. So, if you could get them to refer you to Stanford, that would definitely work out for you.

Rustsmith wrote:JoLyn, although Dr B has his offices in the LA area, he is also on the faculty of the Stanford Sleep Medicine Center, which is one of the RLS Foundation's Quality Care Clinics. I realize that Stanford is not part of the Kaiser network and that it is somewhat far from Sacramento, but many of us travel even further to see our RLS specialists. So, if you could get them to refer you to Stanford, that would definitely work out for you.

Thank you Steve! Do most people with RLS find they want to see a specialist? I am so new to this I'm not sure what is best. I did email my doctor on Friday to tell him I am concerned about the high dose of Mirapex he wants me to start taking. I haven't increased my dose though. In reading about augmentation I believe I have been experiencing that. I included a link from Mayo Clinic for him and hope to hear from him tomorrow.

So much to learn ...

JL

Do most people with RLS find they want to see a specialist?

I would say that the group is split. Some have found that their primary care physician is willing to learn and willing to prescribe whatever it takes to manage our symptoms. Others (like myself) had problems even with the neurologists who are supposed the specialists who should understand RLS. As a result, many of us have been forced to the RLS specialists because our doctor gave up on us, because our PCP wasn't interested in learning or because they couldn't get past the problems of prescribing opioids for a chronic condition like RLS.

JoLyn wrote:

Rustsmith wrote:...Thank you Steve! Do most people with RLS find they want to see a specialist? ...

Steve mentioned he thought about half the people wanted to see RLS specialist. That's my impression too, assuming that the people he's referring to are people that post on the RLS forums.

If talking about the overall group of people that have RLS, I believe that most people don't know that they have RLS, don't see doctors and of course don't take medication. What usually gets a patient with RLS in to see a doctor is when the urge to move interrupts sleep. Assuming the patient has classic symptoms and the primary doctor makes an accurate diagnosis, many people will do just fine on low-dose dopamine agonists for a long time. The problems occur when either the diagnosis is in doubt, the doctor doesn't have the knowledge to treat mild RLS, the patient augments on mirapex or requip, or requires additional medications. This actually is a small portion of the total number of people that have RLS. Estimates of the total population that have RLS vary from approximately 2% - 20%. This varies depending on the population studied. So you can see that a very large number of people have mild RLS that is likely not diagnosed.

The population of people that post on these forums represent those that have problems or special interest. People on low-dose dopamine agonists that have good responses typically don't post on these types of bulletin boards

My best guess is that the milder the symptoms, the more likely you are to see your GP; the worse it gets, the more likely you are to need a specialist. Once it gets truly severe, you go wherever you can and see whomever is willing to do what it takes. I've seen a GP with success...and without success. Same with a neuro. I've had at least ten fails to every success, I'd guess.

I'm traveling to San Diego from northern Idaho to a Quality Care Center because my primary care doctor isn't knowledgeable enough to know that Mirapex and Sennemet are dopamine agonists. He is a good doctor and I have confidence in him to take care of me in other areas. My pain management doctor prescribes oxycodone for my hip/back pain that happens to ease my rls. The door is closing on getting any opioids so I decided to see a specialist; one I don't have to explain rls to and can understand the need for opioids. We can't really afford this trip or the medical bills that will follow but I see no other option. At least we will be able to stay with family while down in SoCal. I thought I would give some insight why I am seeing a specialist.

I forgot to mention that I can't take dopamine agonists as they cause augmentation. Gabapentin and that class of drugs cause side effects that I found to be intolerable.

@2Basset - Although Mirapex (pramipexole) is a dopamine agonist, Sinemet (levo-carbidopa) is not. Both of them can be called dopamine-type medications, though.

@JoLyn
I don't have OSA but I was diagnosed with UARS (upper airway resistance syndrome) which is similar. I used a CPAP for 3 months but it didn't seem to help so I quit. It is not clear that CPAPs help UARS anyway. I was mentally compiling what I've heard from members of this board & merging it with my own experience.

Your doctor may not even know about augmentation. You can tell him/her that you've learned two things that you need to ask him about before raising your dose, and that it's critical. First, you learned from the RLS Foundation that ferritin levels below 75 are associated with a higher risk of augmentation, second, you learned that the maximum daily dose of Mirapex recommended by some specialists to avoid augmentation is 0.25 mg (see quote below). Have some of the Foundation's brochures handy as ammunition, so he will take it seriously. Best one is the Medical Bulletin for healthcare providers - the link below my name below this post takes you to a page where some useful links are, plus information on how to download the Bulletin.

Note that the Foundation's max recommended dose for Mirapex is "0.5 - 1.0 mg" - lower than the usual max for Parkinson's, but not as low as the 0.25 I quote below.

From Buchfuhrer, Mark J., Strategies for the Treatment of Restless Legs Syndrome; Neurotherapeutics (2012) 9:776-790

Both of these drugs should be started at their lowest dose
(ropinirole at 0.25 mg and pramipexole at 0.125 mg) and
increased if necessary every 5 to 7 days by their initial dose
until symptoms are controlled. Although the FDA-approved,
maximum doses for ropinirole and pramipexole
are 4 mg and 0.75 mg, respectively, many physicians exceed
this dose, especially when treating daytime symptoms that
may require 1 or 2 additional doses per day. However, after
10 to 15 years of experience with these drugs, concerns
regarding augmentation of RLS symptoms by these drugs
have made many RLS experts rethink the doses used to treat
RLS, and even whether these drugs should be first-line
drugs of choice for this disease. Due to concerns regarding
augmentation of RLS, in the opinion of this author and
several other RLS experts, the maximum doses of dopamine
agonists should be much lower than the approved FDA
doses (such as 0.25 mg for pramipexole and 1 mg for
ropinirole). However, augmentation may occur even at the
lowest doses of dopamine agonists.

The above extract of Dr Mark Buchfuhrer is very useful to have.... confirmation that he considers DAs should be lower than previously advised.

I really am kind of a wreck. This situation with RLS and Sleep Apnea is really difficult. I am still awaiting my CPAP machine and really don't look forward to the struggle trying to use it. When I was doing my 8 day trial I only slept about 16 hours during the whole thing.

I emailed my doctor on Friday and should be hearing from him by the end of today. I wrote:

"Hi Dr.
In reading through the linked article plus some other articles I am very concerned about Augmentation. I started taking Requip on 8/4/17 and by 11/24/17 it was not working anymore and the dosage had been increased to 3 mg per day. On 11/24/17 I started on Mirapex which has never been completely effective. I found that the highest dosage recommended for Mirapex for RLS is .05 mg. The symptoms of augmentation include ever-increasing dosages, plus RLS symptoms increasing. It used to be that I only had symptoms at bedtime and during the night. For the past few months I have had symptoms during the day, say when I am watching TV or at my desk on my computer. These things make me think that I may be in the rather early stages of augmentation with the dopamine agonists. My understanding is that it can become really awful if advanced. What do you think?"

I included the link to the Mayo Clinic article on the appropriate use of opioids. I feel overwhelmed at all of this right now. I am not sleeping much at all. My doctor gave me Remeron for sleep but it only makes me feel odd, not sleepy. Since I am 68 my doctors will not prescribe certain medications. I'm feeling kind of lost ...

I am very grateful for all of the help and very appreciated advice you all are giving me here. It seems that I am in a holding pattern just waiting for something to happen and I don't like it. One thing I think I figured out is that having to pee is my RLS trigger and since I have to do that so many times per night I am constantly awake and exhausted.

As I am writing this I can see that I really need to take some action so I can get some results. I cannot go on being sleep deprived. If I haven't heard from my doctor by noon. I will schedule an emergency appointment.

You are all such a big help ...

JoLyn

Your letter is good, since it raises the questions you want answered. Watch the decimal point - - you mean 0.5 not 0.05 mg Mirapex. If you leave the leading zero off, you would say .5 mg not .05 mg. This is worth sending a correction to him, so he doesn't discount everything you say.

It would be helpful for him to have the "What is Augmentation?" brochure, which you can download from https://www.rls.org/member-portal/publications and attach to your email. It would be great if you also attached the Medical Bulletin (downloadable from the same page, right near the bottom). You do have to be a member, but it's a few dollars well spent, or you can email info@rls.org and ask about the "scholarship" program for people who can't afford membership.

Your doctor will be able to use those publications to focus his research so he can learn about augmentation, determine if you have it, and decide how to treat it. It is important not to try to make the treatment decision for him.

When you meet with him, be sure to describe what's happening - the possible augmentation, and don't forget to describe how the lack of sleep affects you.

By the way, you may eventually find that having to pee is not really the trigger - it may be that the WED/rLS wakes you up, and when you wake up, you feel the need to pee, which is suppressed when you're sleeping. I think a similar thing was happening to me years ago, before I was treated effectively.

[quote="badnights"]Your letter is good, since it raises the questions you want answered. Watch the decimal point - - you mean 0.5 not 0.05 mg Mirapex. If you leave the leading zero off, you would say .5 mg not .05 mg. This is worth sending a correction to him, so he doesn't discount everything you say.

Oops ...

This was my doctor's response:
[size=50]"I reviewed this article and here are my thoughts.

1. requip is still on a small dose, so difficult to assess efficacy
2. Nature of RLS for you, is likely secondary to untreated sleep apnea. Until your sleep apnea is treated, it is difficult to know if the medication does anything
3. Opioids is not recommended by the FDA or manufacture for treatment of RLS and is not the standard treatment at this time. This is a proposal or study which we can keep an open mind."[/size]

Mine back to him:
[size=50]"1. I'm not taking requip anymore. As of last week you upped my Mirapex to 0.1 mg and sent a new Rx in.
2. Until RLS is under control I will not be able to succeed with CPAP because I cannot fall asleep / stay asleep. I had a terrible time with my CPAP studies because of the rls and pain.
3. My major concern right now is augmentation because, as I understand, it can become just horrible. And I am already experiencing some symptoms.

Having sleep apnea plus RLS is pretty complex!"[/size]

Beth this is so very frustrating. I have only seen this doctor a couple of time and I do really like him. I think he has a real desire to help me and is willing to learn. I am pretty sure that email is just not going to get it and I need to go in and see him.

What do you do to treat your RLS? I have so much to learn!

Thanks a bunch, JoLyn

JoLyn, I can relate to your frustration. I have a good primary doctor who isn't up on RLS at all. I guess I just want to encourage you to keep on looking for solutions to your struggle with sleep apnea and RLS. I have an appointment at a RLS quality care center on Feb. 20 in San Diego. I live in northern Idaho so you see how desperate I have become! I am on an opioid prescribed by my pain management doctor for hip/back pain that helps to calm the RLS but not by much. I discussed the connection between the RLS and the pain with her and the neurosurgeon who is in with her. They agree there is a connection but not to the point of prescribing the opioid for RLS. It's frustrating for sure. So I look forward to seeing how you do. I too am thankful for all the help I receive from this forum.

2BassetMom wrote:JoLyn, I can relate to your frustration. I have a good primary doctor who isn't up on RLS at all. I guess I just want to encourage you to keep on looking for solutions to your struggle with sleep apnea and RLS. I have an appointment at a RLS quality care center on Feb. 20 in San Diego. I live in northern Idaho so you see how desperate I have become! I am on an opioid prescribed by my pain management doctor for hip/back pain that helps to calm the RLS but not by much. I discussed the connection between the RLS and the pain with her and the neurosurgeon who is in with her. They agree there is a connection but not to the point of prescribing the opioid for RLS. It's frustrating for sure. So I look forward to seeing how you do. I too am thankful for all the help I receive from this forum.

Thank you for your empathy! It does really help me to not feel so alone and frustrated. I'm wondering how this is all going to play out. I just got my CPAP machine yesterday but cannot start using it until Monday when it gets registered. I know something for certain ... I did better with RLS when I was taking pain meds for my chronic pain, osteoarthritis and a number of other things. I was taken off of the pain meds when the Sleep Apnea was diagnosed because of the respiratory problems. Pain and RLS caused me to fail my Sleep Apnea study because I couldn't sleep at all.

I wonder about the quality care center in San Diego ... My son lives there. I know Kaiser would have to give me permission to go out of their system in order for me to see that type of specialist. That will be down the road a bit for me but it is something I will keep in mind.

Thank you for taking the time to connect with me. I appreciate it very much!

JoLyn