Restless leg syndrome

[Titbit]

Having suffered from RLS on and off since childhood it now starts in the morning and continues all day until I can take Ropinirole at nighttime. It seems little research is being done what can we do to persuade some scientist somewhere to take this on and relieve the pain and distress experienced by so many of us?

[SueJohnson]

It sounds like you are augmenting from the ropinirole. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

[SueJohnson]

Have you had your ferritin tested? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45%. If your TSAT is OK but your ferritin is less than 100, post back here and I can give you some advice on how to improve it.

[SueJohnson]

If you join the RLS Foundation (rls.org) in the US ($45 for an international membership) you will see there is lots of research being done.

[Joolsg]

Sue is right. Classic augmentation (increase in severity of RLS). Look at the pinned post on augmentation and read everything you can about it and Ropinirole as your doctors will not be familiar with the disease or augmentation.

Spend a few hours reading all posts about Ropinirole and Pramipexole and you'll see nearly everyone joins this site when augmentation starts. Most of us have been through it and have had to read up and research to find a solution. Also read the Mayo algorithm.

You can start the process now by getting bloods, ensuring serum.ferritin is above 100 preferably 200 and start reducing Ropinirole by 0.25mg every 2 weeks.

You'll probably need meds for life so see your GP about replacement meds ( pregabalin, gabapentin or low dose opioids) and also discuss meds to help with severe withdrawal symptoms from Ropinirole.

[SueJohnson]

To elaborate on what Joolsg said: to come off ropinirole, reduce by .25 mg every 2 weeks or so as she said. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. The beginning dose of gabapentin which is now the first line treatment for RLS is usually 300 mg gabapentin. Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that 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. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. 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...

[99selkies]

Perhaps we need to find a scientist who suffers from RLS and has a vested interest in spending their time researching it.

[DicCarlson]

I am saddened by the many, many people who are on DAs that maybe could have been helped by a $5 supplement to raise iron levels. Doctors waved Ropinrole at me with fist pounding emphasis "this is the only solution for your RLS!" Thanks to this forum I resisted even with severe RLS and found the solution to my RLS with iron supplements.

[Shakespeare1564]

Hello Titbit. I have no experience of Ropinirole because I decided not to take it, having been warned about its side effects. Iunderstand that there are more recent and more effective drugs available now. I am very lucky because taking iron pills has more or less got rid of my RLS. Best wishes