Why does rls-uk.org/faqs still say under Treatments for RLS "Dopamine agonists are often recommended for people with more frequent symptoms. These include ropinirole, pramipexole and rotigotine." No mention in that answer of problems with augmentation and that Gabapentin/ Pregabalin is the preferred treatment now. Don't RLS-UK agree with the advice that's generally given in this forum?
( Augmentation is covered elsewhere, but not under Treatments)
It also says "Drugs which work on the dopamine system, such as pramipexole, ropinirole and rotigotine, are mainstays for the treatment of RLS." under Is there a link between iron levels and RLS?
Under News on the RLS-UK site - it does acknowledge the Mayo Clinic Updated Algorithm on RLS but it has not updated anything really except the section on augmentation. Someone from the UK (I am from the US) needs to completely review their site and contact them to get them to update it.
Let's see what Joolsg thinks: I wouldn't be surprised if Julie was already on this
Excellent spot. I'll ask the administrator of the website to remove it. It was clearly in relation to questions asked a long time ago.The website is being completely overhauled but as RLS UK is entirely run by volunteers who suffer from RLS with no website expertise, it can take a while to update all the incorrect sections.
Pure chance I came across it: I was actually looking for info on iron infusion...(general interest not for myself)
Dopamine Agonist drugs are no longer considered the first line of treatment for RLS mainly because of the high chances of augmentation. I personally wish I never heard of DA drugs. DA drugs were fast tracked by the FDA because RLS movements are similar to Parkinson’s patients. The Citizens (of the US) had to sue the FDA to put warning labels on DA medications. The citizens won.
Gabapentin and pregabalin did help for a while, but the side effects are high, brain fog, memory loss are just a couple of side effects.
I think the goal is to determine the cause of RLS and then treat it. The most consistent finding in RLS patients is iron insufficiency. Genetics also play a role, if RLS runs in the family, low dose opioids are probably the best bet.
Chris,
I started our using Ropinirole 6 months ago and used it for approximately 3 months. At first it worked great but as time went on I started having augmentation not only in my legs but in my arms as well. I sometimes had to take two pills within a couple of hours in order for my RLS to calm down so I could sleep. What I didn't know at the time is that this was making my symptoms worse. My neurologist gave me a prescription for Gabapentin. I take one 300mg capsule about 2 hours before bed time and over time 3+ months now my RLS is almost gone and does not bother me during the late afternoon or early evening. I would recommend Gabapentin and stop any use of Ropinirole.
300 mg is a very low dose and is in fact the starting dose. If it is only "almost gone" you could make it completely gone by increasing the dose.
Hi Sue,
that is very interesting. Tell me more about increasing my dosage. I haven't heard this before.Thanks so much.
Increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is highest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
Sue, you have been such a great help here. I so appreciate your advice. On the Gabapentin I only have a dose of 300mg so I either take 300 or 600. I have taken 600 before and it does make me a little drowsy but thats what I need for going to bed. In terms of the Iron and ferritin levels, I did have that checked and it is low. So Im taking iron supplements 60 mg per night about 2 hours after the gabapentin. I also have been taking Magnesium Glycinate 350 mg, two capsule's at the same time as the iron.
The iron and magnesium help me fall asleep. Also a small melatonin 3mg/ CBD (non THC) chewable gummies. I take two of those before bed. My little cocktails seem to be working well. The gummies are from the web site Charlottes Web.
Thanks again for your help.
You could ask your doctor for 100 mg capsule. You are lucky that the melatonin doesn't make your RLS worse as it does for most people. You probably know this but just in case you don't: You can take it every day but be sure it is 24 hours apart. Take it at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. Don't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with the absorption. When your ferritin becomes between 75 and 100 or if your transferrin saturation was below 20, you may need an iron infusion since iron isn't absorbed as well above 75. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after after 3 months.
Again Sue, such great advice. I have heard that iron supplements take quite a while to build up in your system. I didn't know that melatonin increases the RLS symptoms so I am very fortunate that I have not had these issues.
I do need to have another ferritin test as my last one was 6 months ago.
Chris, were you taking melatonin while on the DA? Also, I would try to put some time between the magnesium and the iron but it’s important that the iron be taken before bed …at least an hour. The iron gets rid of my RLS in one hour - for the night. Raising my ferritin would be of no benefit to me. I just need that iron before bed.
Thanks, I try to put at least two hours between gabapentin and the iron supplements and the melatonin. I haven't experienced any negative effects with the melatonin at this point. I'm getting my ferritin levels checked this coming Monday. I believe my numbers are moving up and improving as my RLS is disappearing slowly
Dopamine Agonist doses - the new maximum
Re : Dopamine agonists .. help .. plz ! 😱
Proper treatment for RLS! 🕺🕺🕺
