Best medicine

[mclayton]

what is the best medicine for RLS?

[SueJohnson]

I assume you aren't taking anything so I will give you the information I give a new patient,

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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 ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want 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.

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that 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. (You don't need to split the doses with pregabalin)

Most of the side effects 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 (200 to 300 mg pregabalin)."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) 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 (not sure about pregabalin). 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 up-to-date on it at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in.

[MrCrow in reply to SueJohnson]

Hi Sue, I have a question about pregabalin. I currently have a prescription for 75mg and was wondering if I need to try a lower dose first if I do decide to take it.

[amrob123 in reply to MrCrow]

The mean effective dose of pregabalin for RLS/PLMD is around 312mg. So unless your RLS is very mild, 75mg is a reasonable starting dose.

[SueJohnson in reply to MrCrow]

75 mg is the starting dose.

[MrCrow in reply to SueJohnson]

Whatever I have right now is a bit atypical to regular RLS cases.

My sleep cycle is a bit messed up and I average about 6 hours per day.

I have noticed that as long as I try to maintain a regular sleep schedule the symptoms are manageable.

However if I start sleeping in and take naps early in the morning, in a few days my night time sleep goes for a toss and I get pain all over my arms legs shoulder and chest. If I am sleepy enough I will fall asleep despite the sensations.

I still wonder what is going on with me. The fact that my symptoms are correlated to sleep quality, go away temporarily with massage or movement makes it look like RLS.

I was wondering if I should bite the bullet and start taking pregabalin or try to fix it non pharmacologically with the right sleep schedule. The painful symptoms didn’t start until a few months ago. It feels like my symptoms have gotten worse in a short amount of time.

I don't understand what to do.

[Joolsg]

There are at present 4 main categories of meds prescribed in the UK for RLS.Benzodiazepenes, dopamine agonists, gabapentinoids and opioids.

Dopamine agonists are NOT Recommended by RLS-UK, the charity that runs this help forum. They are relegated to 'end of life scenarios' by experts and RLS-UK is trying to get the UK medical Profession to learn about the latest treatment and research.

Benzos aren't very effective as patients tend to develop tolerance.

As SueJohnson points out, first line therapy is now iron treatment via pills/infusions and reviewing and replacing trigger meds ( anti depressants, sedating anti histamines, statins, beta blockers, PPI meds).

If this doesn't help, gabapentinoids are now first line medications. If they don't help- low dose, long life opioids are highly effective.

[mclayton]

Hi . . . Thank you so much for the great information. I am in the US. I have been taking pregabalin for about 1 1/2 years now and was thinking of switching to Ropinirole. My appetite has increase and I am now having trouble fall/staying asleep. My iron test was in the lower normal range.

[SueJohnson in reply to mclayton]

The LAST thing you want to do is switch to ropinirole. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...

And if ferritin is below 100, one is more likely to suffer from augmentation per the RLS foundation publication on augmentation.

Pregabalin helps you fall asleep. If you are having trouble staying asleep you may have PLMD which could wake you up.

If your iron was low, chances are your ferritin is too, but do have it tested as I advised above. Meanwhile If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.

Take it every other day as more is absorbed that way preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your transferrin saturation is below 20, you may need an iron infusion. If you take magnesium (or magnesium rich foods), calcium (or calcium rich foods) or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets . Ask for a new blood test after 3 months if you are taking iron tablets. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible.

[SueJohnson in reply to mclayton]

Since your appetite has increased you might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Pregabalin is much more likely to cause weight gain. Multiply the pregabalin amount by 6 to get the correct dose. You can switch directly. 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 the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason.