Introduction

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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Karine
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Joined: Sat Aug 19, 2017 10:18 am
Location: Germany

Introduction

Postby Karine » Thu Aug 24, 2017 4:34 pm

Hi everybody,

I'm Karine,french living in Germany since 2000. I am 40 and have been officialy diagnosed with RLS January. Actually I supposed I have RLS years ago, but was not ready to take pills acting on my brain and this forever.
For 2 years I started therapy beacuse of a depression and my therapist didn't want to continue with me if I don't take antidepressants because I was in such a bad place that there was no success, no improvement, not matter what she tried or said 8and she's very good). So I had to revide my mind concerning pills acting on my brain... And this wasn't that bad, it helped a lot.
But.. to treat a depression correctly, it's also important to sleep well so I decided to go on for a treatment "against" RLS.
Today, I'm free from antidepressant since 2 months (fingers crossed I'll never need them again, still have to work on me!) and only taking Pramipexole 0,18 mg, 1 tablet a day in the evening only.
I just have RLS in the legs till now, the classsic case: after work on the sofa or in the bed, my legs start "dancing", let's call it like this, it's nicer!
The medicine helps a little, I don't have it every evening but on some evening, it's not helping at all.
In general, my boyfriend says I'm still making sport nights, which I don't notice but I'm still tired in the morning when I wake up.
So the treatment is ok but not perferct. But as everybody knows here, there's no way to get rid of the "dancing", we can just try to make the best out of it.

As you can see, I'm not a bad case, I also could live without medicine, even if the quality of life is better with it ;-)

I'm here just to read the experience of other RLS persons, see what's doable in the US (you're much better then Europe when it's about research) and would like to see what could happen with me, how the illness could develop. I'm afraid it's evoluting in my case 'cause I have tingling in the arms since some months but no need to move my arms yet.

So... that was me and my little RLS-case.

I hope it's all to understand, my Englisch is not reaaallly bad, but not reaaaallly good either ;-)

Wish you all a nice evening / day (don't know where you all are, here in Germany it's 6:30 p.m.)

KR
Karine
Karine
C'est la vie!

stjohnh
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Location: Palo Alto, California

Re: Introduction

Postby stjohnh » Thu Aug 24, 2017 4:56 pm

Hi Karine, welcome to the RLS community. You will find lots of help and support here.

I'll very briefly touch on the high points of what I would suggest and I'm not sure how much is possible in Europe, but this is what I'd recommend in the United States.

First I would make sure to get my ferritin checked and hopefully get it above 100 if possible.

Secondly I would try to reduce my pramipexole dose down to 0.125 mg in hopes of avoiding augmentation. If needed Kratom taken at the same time as pramipexole helps with dancing legs if 0.125 mg of pramipexple is inadequate .

Thirdly Gabapentin and marijuana seem to be the most helpful for RLS patients that have sleep issues.

Some antidepressants can make RLS worse, so I would be careful about which antidepressant I was taking if you have to restart an antidepressant.
Blessings,
Holland

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Karine
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Joined: Sat Aug 19, 2017 10:18 am
Location: Germany

Re: Introduction

Postby Karine » Thu Aug 24, 2017 5:40 pm

Hi Holland,

thanks for your quick answer! :)

My ferritin level is ok. I don't know the value but it's been checked and is fine.
To Pramipexole: I had a lower dosage and asked for a higher one because there was no real change. Just got tired faster but not enough to stop my legs.

To Kratom: I don't really like losing control and it's such a drug, so nothing for me. Plus: it's not forbidden yet here but the state's thinking about classifying it as narcotic
To Marijuana: it is forbidden, expensive and I don't like it. It was fun as I was young but it's much too strong nowadays, my body is refusing it (The last time I smoked for fun for 16 years I got inconscious after throwing up :-( Now just by smelling it my stomach starts to fight...)
I'm a control freak and don't like such drugs anymore (I don't drink alcool anymore either)

Concerning Gabapentin: I just read about that and it seems to be very good but for much extremer cases than mine. I think I'm at the beginning of the illness and don't want to start with such drugs already.

My "suffering tolerance" ist quite high which I think is good in this case, I don't want to cross the line to one direction (not enough medicine) or to the other one (too much medicine). It's a disease we'll carry our life long, so I'd better be parsimonious with medicines.

But thank you for sharing, interesting to read what's possible, what a doc says about it :)
Karine
C'est la vie!

Rustsmith
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Re: Introduction

Postby Rustsmith » Thu Aug 24, 2017 6:05 pm

Karin, you need to find out the number for your ferrtin level. "Normal" for the general population is 20, so often when our doctors tell us that our ferritin is OK, this means that it is over 20. For those of us with RLS, the ferritin level needs to be over 75 and it is even better if it is over 100. This is especially important for those of us who take pramipexole because low ferritin levels can increase the chances of augmentation.

As for gabapentin, many doctors in the US who are very familiar with treating RLS are starting to use gabapentin as the first medication for new RLS patients rather than pramipexole. This is because gabapentin provides more help with sleep than pramipexole and because gabapentin does not cause augmentation.

On augmentation, in case you have not seen that information, it is when a dopamine medication like pramipexole stops effectively controlling your RLS and starts making it worse. Your doctor might tell you to take more pramipexole with the idea that your RLS is now worse or that you just needed a bit more. At first things are better, but then the RLS comes back, so you take more and the circle of increasing the dose continues. You are taking 0.18mg, at one point while I was augmented on pramipexole, I was taking 1.0mg and my life was terrible. And then you have to get off of the pramipexole, which either involves a week of almost no sleep and continual RLS symptoms or else the use of a strong narcotic medication to cover the withdrawal symptoms of stopping the pramipexole.
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.

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Karine
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Location: Germany

Re: Introduction

Postby Karine » Thu Aug 24, 2017 6:35 pm

Hi Steve,
thank you for your message!
I have to say, I didn't know that about the ferriterin level we need... My family doctor sent me to a neurologist directly because she wasn't really aware of what to do (I love docs who know their weakness, it's rare!) and it's actually one with a good reputation and he checked everything again so I suppose he does it right. My family doctor gave me levodopa / benserazid-neuraxpharm 100/25 for the time till I get an appointment with the neurologist and he switched directly to pramipexole because the other drug is one you always have to take more and more if you want it to work properly. So I think he knows what he does. But I have to make a control appointment anyway so I can ask him and talk with him about it.

I read about augmentation but I didn't know pramipexole was a medicine like that because as I just wrote, I got it because the other medicine was like this... I already had 10 days break of the pramipexole and it was crapy... But maybe due to different factors: I had just stoped the antidepressant, had much stress at work and no time to pickup the prescription to get the pramipexole pills (because of the job). It lasts 10 days till I get my drugs again and definitely noted the difference. Now I'm trying to catch up the sleepless nights...
Concerning gabapentin: when you say it doesn't cause augmentation, does it mean you take the same dosage your life long? How can the doc say if the augmentation of the symptoms is due to the medicine or to the normal evolution of the illness?

Sorry if my questions or remarks are stupids, I'm quite new in this matter and it's not all clear to me yet.... :crazy:
Karine
C'est la vie!

Polar Bear
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Re: Introduction

Postby Polar Bear » Thu Aug 24, 2017 6:51 pm

""" How can the doc say if the augmentation of the symptoms is due to the medicine or to the normal evolution of the illness?"""
Certainly some doctors have yet to hear of augmentation and they may consider that the RLS was just getting worse.
If you find that the symptoms come earlier in the day, are stronger, start to occur in your arms..... this is likely to be augmentation.

On the main front page of the Discussion Board you will find the Augmentation Forum which will provide useful information.

Here is a wonderful book, it is easy to read and can be used for discussion purposes with your doctor. Knowledge is power and this contains excellent information from a reputable source. Many of us have a copy of this book.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.
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

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Karine
Posts: 4
Joined: Sat Aug 19, 2017 10:18 am
Location: Germany

Re: Introduction

Postby Karine » Thu Aug 24, 2017 7:36 pm

Hi Betty,
thank you for the advice concerning the book and the augmentation.

Just bought the book from the US, in Europe I can only find it between 60 and 190 EUR (1 EUR = 1,1 USD) o.O. It's cheaper to import despite of freight costs, customs etc...
Should have it in 2-3 weeks :)
Karine
C'est la vie!

ViewsAskew
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Re: Introduction

Postby ViewsAskew » Thu Aug 24, 2017 8:39 pm

Karine wrote:Concerning gabapentin: when you say it doesn't cause augmentation, does it mean you take the same dosage your life long? How can the doc say if the augmentation of the symptoms is due to the medicine or to the normal evolution of the illness?

Sorry if my questions or remarks are stupids, I'm quite new in this matter and it's not all clear to me yet.... :crazy:


No stupid questions here! I did not know any of this when I came here. That is why we are here - to help each other.

Only drugs that are increase dopamine - called dopaminergics - cause augmentation. Well, one other drug may, but the cases are limited (that is an opioid-like drug, tramadol). Since gabapentin and the others in the same family are not dopaminergics, they do not cause augmentation.

that does not mean your dose will always stay the same. Some people do great on gabapentin or its sister drugs pregabalin and gabapentin encarbil. But, some people find that it does not work at all OR that is works for awhile and loses effectiveness over time.

Sadly, there are almost no pharmaceutical options for RLS/Willis-Ekbom Disease that allow you to take a dose for years without any changes. Some of us are that lucky, but many of us are not. The disease can worsen, too, meaning that you need to change doses.
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: Introduction

Postby badnights » Fri Aug 25, 2017 5:14 am

Any medication that stimulates dopamine release or activates dopamine receptors can cause augmentation. It happens faster and is more likely to happen with levo-carbidopa, but it is also quite common with pramipexole and ropinirole, and even happens with rotigotine - these are all dopamine meds.

There are three factors that make augmentation more likely: higher dose, longer time on the drug, and ferritin levels below 100. Your neurologist, no matter how good he is, might not know much or anything about augmentation. Neurology is a huge field. Even neurologists who are movement disorder specialists are often unfamiliar with augmentation. So don't assume anything.

"Natural" progression of the disease is not inevitable - some people get better. But I agree, it can sometimes be hard to tell what causes a worsening. Augmentation is usually a much more severe and rapid worsening than natural disease progression. A natural progression might never affect the arms in many people. Might never affect a person in the daytime. Might take decades to worsen enough that symptoms don't stop towards morning. But augmentation can make all those things happen in as short as a few days - or as long as a few years. There are criteria to help determine if you're augmented (I have copied them at the end of this post). The RLS Foundation has a number of brochures on augmentation, all of which are good: https://www.rls.org/treatment/managing-augmentation (you have to be a member to download some of them). The key is to compare your symptoms now with your symptoms before you started a dopamine medication, and it is only difficult if you have been on the medication for years. For you, it should be fairly clear. If symptoms are worse (begin earlier in the day, affect more body parts, more intense, start up sooner after you sit or lie down, etc) then you are probably augmenting. When augmentation has occurred, taking a dose will usually help for a while, but it will seem to wear off sooner - as well as the other signs of worsening I just mentioned.

Augmentation is not the same as tolerance, and not the same as dependence. Augmentation is a worsening of the disease caused by the medication that is supposed to help it. There are some indications that the worsening is permanent or long-term, but no firm evidence yet. Tolerance is the body's getting used to the effects of the medication, so you need more to achieve the same effect. Dependence is the body's getting used to the medication being present, so that if it is suddenly absent, the body freaks out for a time until it adjusts.

Gabapentin is not very effective for most people against severe symptoms. It tends to be more effective against milder symptoms, or when combined with a different class of medication (an opioid or a dopamine medication). It can be of great help in promoting sleep, possibly because it counters the effects of excess glutamate in our brains (glutamate is an excitatory neurotransmitter that seems to be present in abnormally high concentrations in WED/RLS brains).

Marijuana also seems to be of benefit in helping sleep, but at least one person on this board uses a special blend to control symptoms.

Kratom has action similar to opioids and can be a godsend for people who do not have access to opioids.

Whether or not you have augmented, stopping a dopamine med when you have RLS/WED usually causes worse symptoms of WED/RLS for a period of time that ranges up to a few months but is normally a only a couple of weeks. This can be surprising, and often causes people to return to the dopamine medication, thinking that their baseline symptoms are that much worse. But it is a largely temporary effect. Opioids are the only type of medication that can touch these symptoms. I tell you these things because you might have to stop at some point.

I agree with the others, try to get your dose down, which you can do if you supplement with another class of medication (anti-convulsant or opioid), and get your ferritin up if it's under 100 (ask for the actual number! no matter how excellent your neurologist's credentials).

+++++++++++++++
For you to be augmenting:
1. All of the following must be true:
- you have had an increase in symptom severity as compared with when you started treatment
- the increase in symptom severity cannot be accounted for by other factors (change in medical status, lifestyle, natural progression of the disorder)
- there was a prior positive response to treatment

2. Also, either A or B has to be true:
A. persisting paradoxical response to treatment: WED/RLS symptom severity increases some time after a dose increase and improves some time after a dose decrease; or
B. earlier onset of symptoms. This can mean either an earlier onset by at least 4 hours
OR and earlier onset by 2-4 hours accompanied by one of the following:
- shorter latency to symptoms when at rest, as compared to before treatment
- extension of symptoms to other body parts, as compared to before treatment
- greater intensity of symptoms, as compared to before treatment
- shorter duration of relief from treatment, as compared to before treatment
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


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