The German RLS group has released new Guidelines for the Treatment of RLS.I haven't read them in detail yet.
A quick skim read shows that they have dismissed the old 'Primary & secondary' RLS classification, which I agree with. I think there are many different causes and those causes affect families & can be present from birth.
Sadly, they STILL have dopamine agonists as first line med treatment, jointly with gabapentinoids. The only conceession they make is that the dose should be kept within the maximum dose. This is VERY disappointing.
They do recommend iv iron infusions, but otherwise, I'm disappointed.
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Joolsg
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Sigh..... It's so disappointing. Germany still routinely prescribes Levodopa for long term use. At least this guidance relegates levodopa to 'occasional' use for intermittent RLS. But otherwise a huge disappointment.Claudia Trenkwalder knows all the latest research and she co wrote some US guidelines. I can only guess that she came across massive resistance from her fellow German co writers??
Hi Jools, I am German... living in the UK and can confirm that German treatments are not much different However we would not have a 28 week waiting list to see a neurologist like we have in the UK, that certainly would not happen in Germany. They are very set in their ways over there and you wouldn't be able to bend the rules, like you see in the UK.By the way I am wanting to swap Gabapentin for a low opioid, hence I am trying to see a neurologist in Sheffield. Gabapentin 600 mg hasn't controlled my RLS fully.
I have been listening to meditation music on my smart speaker all night and found that improved my sleep! I sleep alone, so definitely keeping this up
It is what it is. I have been on the waiting list for over a year now. I know that there is little a neurologist can actually offer me so there’s no point in trying to get a private consultation.
Hi everyone, I think it's disgusting that as patients who have been long time diagnosed with conditions should be referred back to our GP for our follow up care after being discharged from the consultant dealing with the particular complaint. My point being, The only reason we are discharged and not held in a completely separate section is because it looks better for the hospital if the powers that be, can see all of the 'Discharged" this month figures. Not good for us though... because as soon as we get an issue and need to see said consultant, we are right at the bottom of the pile again, even though we are NOT new patients, but follow up patients (we've already been diagnosed remember) so therefore shouldn't have to wait the current 26 weeks because we have an issue with an ongoing condition that they already know about!
So in my eyes, the NHS needs to make a new section for us 'diagnosed but stable and under GP care' for instance. Rather than just New or Rebooks. I know it messes with the target discharge no's but really, as a frustrated patient who is currently waiting on 4 different consultant appointments I don't care about targets!
Sorry, rant over. I know many of us are in the same boat.... its disgusting. And as for your wait times in Ireland, that is beyond a joke... hugs to you x
I am curious as to how medical treatment in other countries is funded. Can you tell me how it works in Germany please? Do you have an equivalent to our NHS, or is it all private and paid for by insurance?
It's a private health insurance. In Germany you are obliged to have health insurance. When working you and your employer contributes. When not working German equivalent to Universal Credit will pay the health insurance for you.
600 mg of gabapentin is a low dose. I may have told you this before but according to the Mayo Algorithm the usual effective dose is 1200 to 1800 mg. Is there a reason you haven't considered raising the gabapentin?
I may also have told you how to take it but in case I didn't: increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason.
Opioids have side effects which if you are not experiencing on gabapentin you might want to avoid.
Hi Sue, yes... you have replied to me before suggesting the above. I am scared to increase Gabapentin as it is addictive. I would also struggle with work (5.00 till 9.00 p.m., sometimes until 10.00 p.m.) I get super tired after taking Gabapentin. So, at the moment taking 600 mg at 8.30 p.m. at work. I am seeing a neurologist in the beginning of next year and want to go on low opioids instead. I started "Restex" (Levadopa) tablets aged 25 years old approx. So, I guess I was super lucky that I only augmented about 3 years ago.
My kids both have RLS and live in Germany. They both smoke weed (it's legal over there) and say that that is very helpful.
Criticising me for taking addictive meds.
Unfortunately, we have addictions in my family. My mother died from alcoholism age 59 years. So, I am also staying away from anything that's addictive apart from RLS meds.
Understood. Although one should take gabapentin in divided doses for maximum effect, one can take it all at one time. And although it should be taken 1 to 2 hours before bedtime, I actually take my last 20 minutes before bedtime and it works.
However gabapentin is NOT addictive. Addiction symptoms include uncontrollable cravings and inability to control use even though it's having negative effects on personal relationships or finances.
And if your kids are criticizing you for taking addictive medicines and they think gabapentin is addictive wait until you take an opioid. We all know opioids are not addictive for those of us with RLS but . . .
I may have told you this but to come off the gabapentin you need to do so very slowly to avoid withdrawal effects. Reduce by 100 - 200 mg every 2 weeks. If you do so you will have very few or no withdrawal effects. If you do have any, slow down even further, In very very rare cases you still might have withdrawal effects.
By the look of the latest news about driving restrictions if we’re on such large doses of Gabapentin and also opioids, there’s no way we’ll be allowed to drive as sleepiness is a side effect. They get us every which way .
If you take gabapentin at night it doesn't make you sleepy the next day.
I don't live in the UK so I don't know anything about new driving restrictions but I do know many people on this forum are taking opioids and presumably are driving. You might want to make a new post asking about this.
Levodopa and other dopamine agonists can cause serious addiction issues . Just look up Impulse Control Disorder.
And addiction is uncommon on the otherclasses of meds used to treat RLS. RLS patients take them at a lower dose and they do not usually lose effectiveness. Loss of effectiveness is what drives addiction. The patient has to take higher doses to achieve the previous cover. So pain patients end up increasing the dose and becoming addicted
The dopamine agonists cause addiction and actually are the ONLY drugs that worsen the disease itself (iatrogenic).
If you spent so many years on levodopa, I'm pretty confident you will not become 'addicted' to gabapentin.
As SueJohnson says, 600mg is well below the average dose.
However, if 600mg causes excessive sedation after 2 months taking it, you may be better trying pregabalin ( in the same class of drugs, but works in a different way and with slightly different side effects).
And if that doesn't help, you can try the long half life opioids like methadone or Buprenorphine which are less likely to result in addiction than the short half life opioids ( tramadol, morphine, codeine, oxycodone).
And obviously, with a history of family addiction, inform your doctors so you are monitored regularly.
I have taken Pregabalin in the beginning when coming off Pramipexole and ended up having a few falls. I even needed to go to hospital after one of those. So, I have switched from Pregabalin to Gabapentin for that reason. Thanks for taking the time to give me valuable advice, Jools!
We all do. But sadly, unless refractory RLS responds to Iron infusions, it's incurable and we will need meds for life, in the same way that PD & MS patients need meds. We neec respite from the unbearable symptoms and we need sleep.I hope you find the right meds and doses.
I am also German and live there. My experience is different. It is true that neurologists like to prescribe dopamine agonists first, but that is because they are not particularly toxic. In other words, they are often associated with relatively mild side effects (ICD and Augmentation excluded).However, doctors here are generally willing to learn and, in particular, to prescribe low-dose opioids.
Why Claudia Trenkwalder of all people is taking such a strange position is a mystery to me.
Moreover, she is not the only one. Ambra Stefani, Cornelius Bachmann and Anna Heidbreder are also involved in these guidelines and have often spoken out publicly against dopamine.
It's the same here. So many neurologists say they are against DAs but then still prescribe them! Madness.We can only hope the UK and Germany start to listen to patients.
I have talked today to Claudia Trenkwalder and asked her specifically this question, why Germany's guideline is still relying on agonists as first-line instead of Alpha-2-Delta-Ligands. Her answer was: "I should read the guideline correctly: They are equal valid for first-line as agonists". First, I thought I was wrong and I had the impression, she is not against A2DL. But I have found some (not old) medical articles where she has been quoted with "agonists are still first line therapy".
As JimAlp has mentioned below: Maybe they adjusted a little bit in their speaking: "(s)he started to mention DAs and alpha2-delta ligands as valid first-line treatment".
But if it is accepted as first line therapy, why it is not even mentioned in the part "Recommendation for treating augmentation"??? There is only switching to Rotigotin or opioids.
Cornelius Bachmann is BIG FRIEND of agonists, I will explain in a post below.
Let's just say what everyone knows: it's big pharma leaning on the top neurologists.
"Occam's Razor" is the axiom that the simplest solution to a question is likely to be the right one. It's what it's called a "dispositive indicator". There's no other meaningful answer. The neurologists with positions to protect may have to make pretenses to keep their overlords happy, but they can't stop us ordinary folk from seeing the noses in front of our faces.
And don't think that it's just me who knows this. The doctors all know it and talk freely about it, when they come to trust you.
"Occam’s razor is named after William of Ockham (also spelled Occam), an English Franciscan friar, philosopher, and theologian who lived in the 14th century (circa 1287–1347). William of Ockham is best known for his principle of parsimony, now called “Occam’s razor,” which suggests that when confronted with competing hypotheses, one should favor the simplest explanation that requires the fewest assumptions.
"Though he didn’t coin the phrase “Occam’s razor” himself, his work emphasized that “plurality should not be posited without necessity,” meaning unnecessary complexities should be avoided. This principle has had a lasting impact on philosophy, science, and problem-solving, encouraging thinkers to seek straightforward solutions over unnecessarily complicated ones."
After having been a patient of the leading German RLS doc (Mrs Trenkwalder), I am not surprised. I was a patient in the RLS/Parkinson hospital she was running and was shocked how badly organized it was. I also had to argue with her to get me off of pramipexole which i was augmenting from, with her even citing a study which allegedly showed that augmentation was uncommon. I checked and it turned out she had completely misunderstood the outcome of the article. She admitted her mistake but treated me condescendingly for the rest of my stay.
Edit: Interestingly, another doc at the same clinic later contacted me since she felt bad about the quality of care I had received and did her best to compensate for it, also being clearly more knowledgeable. I guess you have to spend your time on either working on your reputation or on caring for your patients, but not both...
Sure! My stay was in january of 2022. I heard that not long after that she stopped seeing patients in order to focus more on her other commitments.It seemed quite obvious to me that seeing patients was not what made her happy. My guess would be that these other commitments were roles as chairwoman of some industry committees and also research.
German medicine level was always disappointing for me.
But now I’ve found a way to use Levodopa, and it finally works for me—previously, I had very negative effects. In short, I take it not before going to bed but after I start experiencing RLS symptoms. At that point, dopamine levels are low in the brain, which prevents the neurotoxicity that causes the side effects. Additionally, I can use only half the usual dosage, which is sufficient.
It's really hit-and-miss with healthcare here. It took me several years, but I did find docs which were able and willing to help, even if there was no money in it for them.
Your point about when to take L-Dopa is very much like something I've been wondering all along: 24 hour patches seem to be considered the best solution with dopamine agonists (Neupro), allegedly causing less augmentation since the brain supposedly "tolerates a constant DA level" better. I always thought this makes no sense, just like you say: Why pour dopamine (-agonists) into the brain at times when it doesn't need any, evidenced by no symptoms? Wouldn't the cells regulate their sensitivity down just _because_ there is an elevated level of dopamine at the synapses ALL the time? I'm just a humble guy with a master's in psychology and not an expert in the neural physiology though...
Just look up Neupro /Rotigitone in the search engine on this site.Every person taking it experiences augmentation. Dr Berkowski, a top US expert has done a YouTube video on it. And when augmentation breals through, it's even worse than on the short acting DAs.
I am quite sure that the reports here would be like that, but equally sure that those docs would dismiss it as anecdotal evidence. I am not saying they are right, but I would feel better if there were long(ish)-term studies confirming what we all agree on it looks like…
I actually had the same conversation with Dr. Cornelius Bachmann. He is the medical advisor to the German RLS Association. He is of the opinion that augmentation is something rather rare and that you can simply switch between the dopamine agonists. This would not result in real augmentation.
The problem I see with the Rotigotine patch in particular is that, as far as I know, there is only one study by Ms. Trenkwalder and another by Prof. Örtel, both of which claim that the risk of augmentation is significantly lower.
Dr. Berkowski has already refuted this in a nice video.
Very interesting for me because I have the exact same discussions with Dr. Bachmann. He has its own definition of augmentation. He also stated, the a prerequisite should be, that the agonist has been taken higher than allowed!? He told me I don't have an augmentation due to that and that it is "only a loss of efficiency" instead auf augmentation if every few weeks the agonist stop working. He then advises to switch between those 3 agonists. I am at the highest level of each agonist and the cycles are getting shorter and shorter...
That could be the reason why "augmentation is so rarely", if you don't want to see it.
I have asked Claudia Trenkwalder about this kind of treatment (switching agonists): She said it is clearly augmentation and this kind of process doesn't make sense and is neither recommended nor part of the guideline - where Dr. Bachmann was part of the taskforce (he is mentioned). I have also never found a recommendation like this in any publication except in one: an information for doctors published by the RLS-Vereinigung - written by Dr. Bachmann...
I am terrified, that those experts writing a the same guideline and called experts are not clear and united about (older!) definitions and treatments.
This is terrifying to read. I NEVER took more than 4mg Ropinirole, but I clearly suffered augmentation. It started earlier, moved to my hands and my face.Now I'm off the poison and taking Buprenorphine, I have ZERO symptoms.
Dr Bachmann needs to LISTEN to his patients and ask himself why every patient is telling him the SAME thing. The drugs are making the RLS more severe.
You're right: My question is, if he has never asked himself why people are on high doses auf agonists? They have come with pain to the doctor and have asked for it...! The reason is, that the agonists in that prior dose has become too less then. The augmentation has definately already started earlier, before the dose has been increased exceeding the recommended maximum level.
As Dr. Berkowski said in his video about Rotigotin-/Neupro-treatment for augmented patients study: More than 50% of those people had an increase of the dose in a certain period of time, where other medications don't have that. Why has the dose been increased???
Absolutely. And nearly every person on here that has been switched to the patch reports that augmentation happens pretty quickly.We should do another survey/questionnaire aimed at those on the Patch.
Small correction: these are not completely new guidelines. They were translated into English this year, but the original German guidelines were published in 2022 (dgn.org/leitlinie/restless-....
I'm a member of the Swiss RLS group, where the medical advisory board consists of Dr. Johannes Mathis. He is also a co-author of those German guidelines. In the Swiss RLS group member magazines, he often mentioned DAs as first-line agents for chronic RLS until I questioned him in an email in 2022 about his continued emphasis on DAs while international experts had shifted to alpha2-delta ligands as the primary treatment. I never received an exact answer to this question, but from that time on, he started to mention DAs and alpha2-delta ligands as valid first-line treatment.
I can very much relate. I have so far only found two neurologists who could be trusted and I've lost count on how many I've seen. Your story confirms my stance on listening closely: If what they say sounds confusing (when you are rather knowledgeable yourself), it's probably because they themselves are confused and working with unsubstantiated knowledge, not because you're not smart enough.
There's just no way around reading the papers yourself if you want excellent care. It's a shame, really. Now if someone saw a paper dealing with treatment options for patients with Parkinson's who at the same time suffer from long-term RLS augmenting on dopamine (or DAs). The former calls for dopamine, the latter excludes it...
Thanks for this update.I lost faith in most doctors re RLS a long time ago. I'm still unable to fathom how ANY doctor could prescribe a drug that is known to make the disease itself 1000% worse. It is completely illogical.
I can understand General Practitioners doing so because Dopamine Agonists are 'licensed' in most countries and GPs are not trained in RLS. But for a neurologist to prescribe as first line treatment is inexcusable.
I am not surprised. The medical industry is totally focused on prescription drugs. That is where they make money. Plus the pharmaceutical industry gives money to support the medical schools. I am in the US and have heard that in medical schools they spend one day learning nutrition. You can see how unhealthy the American population is. I have no faith in any medical doctor.
In the UK doctors aren't paid to prescribe meds, unlike in the USA. General Practitioners are the most common prescribers of DAs. But their lack of training & knowledge damages patients.I am more wary of any neurologist in the UK that prescribes DAs. I wonder if they're accepting ' benefits in kind' to persuade them to keep prescribing DAs.
It is really hard to get answers. So many people suffer from RLS and not much research is done to get answers. I get relief with medical marijuana. In the US you can get marijuana in certain states. I only take a small amount at night and most nights I get good sleep. From what I have read all the prescriptions come with side effects and then the rls gets worse over time. So I will not take any. Marijuana is a natural plant and actually helpful for many health issues.
Cannabis is legal here in the UK for medical use, but it's expensive. It certainly helped me during DA withdrawal. But it didn't stop the severe RLS. But I know it helps many others.
Doctors aren't paid to prescribe medicine in the US. They may get free samples. They may be visited by the representatives and encouraged to prescribe their medicine. But they aren't paid.
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However we would not have a 28 week waiting list to see a neurologist like we have in the UK, that certainly would not happen in Germany. They are very set in their ways over there and you wouldn't be able to bend the rules, like you see in the UK.By the way I am wanting to swap Gabapentin for a low opioid, hence I am trying to see a neurologist in Sheffield. Gabapentin 600 mg hasn't controlled my RLS fully. 
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RLS and the Moderna vaccine
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