This may help some of my fellow suffe... - Restless Legs Syn...

Restless Legs Syndrome

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This may help some of my fellow sufferers.

jefro profile image
4 Replies

I have suffered with RLS for over 20 years in fact I can date it to at least 25 years and I have at last found a combination of drugs that have, at present, left me with NO symptoms and not even a twitch.

During my past episodes at finding a drug that would work, I eventually was on Rotigotine 4mg/24h which I have used for over 5 years and which would almost control RLS but I would end up with episodes a couple of times a week. Enter stage right a new young doctor at our GP surgery who suggested Gabapentin and as I hadn't taken any for many years because of hallucinations, I agreed to try again but on top of Rotigotine. One 300mg Gabapentin twice a day and I am the happiest man alive.

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jefro
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Madlegs1 profile image
Madlegs1

Really happy for you. It is a combo that works for many people.

However (isn't there always one !). You should be aware that all dopamine agonists have a very strong tendency to cause augmentation - which you may have heard about if you follow this site.

Your combo may well last you many years, but it can also lead to a lessening of your resistance or coping with certain receptors.

If I was your neurologist, I would recommend that you very slowly and by tiny doses, get off the Rogitotine. You could be increasing the Gabapentin as you go.

Also, I'm sure you already know, to keep any magnesium medication at least 3 hours apart from the Gabapentin.

Wishing you all the best for the future.

SueJohnson profile image
SueJohnson

I second what Madleg 1says. It's great that it is working for you but up to 70% of people on a dopamine agonist like Rotigotine eventually suffer augmentation. You are on the equivalent of 6 mg of ropinirole where 4 mg is the maximum. so you need to be aware of the signs of augmentation

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.

If this happens you will need to come off the rotigotine which can be very difficult. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. 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% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice. Improving your ferritin is one of the ways to help delay augmentation.

Joolsg profile image
Joolsg

Great news. However, it sounds like Rotigitone is causing severe worsening of RLS (augmentation) and the gabapentin, although working now, may stop in the next few months.

If it does, read up everything you can about Augmentation and you will then need to start reducing Rotigitone very slowly.

rls-uk.org/augmentation-reb...

sleepreviewmag.com/sleep-di...

RLSLearner profile image
RLSLearner

Great to hear, thanks for sharing

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