Hi everyone

[Karma-]

Hi, first, thanks for the opportunity to join this group and to HelthUnlocked. I just joined some days ago. I'v been suffering from RLS for the last 10 years more or less. But I guess it has intensified in the last 3 years, mainly because (in my opinion) of stress from my job, which after Covid, it has been very tough. I started taking gabapentin years ago and did well, but after some years it stop working. Then I started taking Sifrol (medical advise) and I don't feel it is helping me. What would you suggest? Thanks

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

You may not have been taking enough gabapentin or taking it in the wrong way. How much were you taking and when? If it worked once it should work again. You may need more because of the increased stress.

You don't want to be taking sifrol (pramipexole). 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 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...

I strongly advice you to get off the sifrol. First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.

To come off pramipexole, reduce by half of a .088 [.125] tablet every 2 weeks or so. You will have increased symptoms. Although since it is not working you probably won't. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. Pregabalin is more expensive than gabapentin in the US.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After you are off pramipexole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Pregabalin is very similar to gabapentin and they are interchangeable.

Take it 1-2 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. 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 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. 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.

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

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Karma- in reply to SueJohnson]

Thanks Sue. I think I was taking 300 to 400 mg pill of gabapentine initially when it was diagnose to me. And then some years later doubling that because it was not working for my RLS. Is it safe to increase the gabapentine to 1800mg? It sounds like a very high dose. I wonder about the secondary effects. I will also check my ferritin. Thanks

[SueJohnson in reply to Karma-]

Yes it is safe. You can take up to 3600 mg although with not taking more than 600 mg 2 hours apart that is difficult. Above 1800 mg one usually switches to pregabalin which can be taken all at one time. If you were only taking a total of 800 mg that is a low dose. But when you are off the sifrol (pramipexole) for several weeks ask for 100 mg capsules so you only increase by that amount every couple of days. If you didn't have side effects last time, it is unlikely you will have them this time.

Check out the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...

[SueJohnson]

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

[Karma- in reply to SueJohnson]

Thank you very much for your response. I was tight up with work these days, so it took me some time to come back and respond. I will come back again with answers to your questions. I live in Santiago, Chile, Southamerica.

[Eryl]

The reason that stress increazes RLD is because stress incteases blood sugar which increases insulin levels and insulin is inflammatory. Theeasiest way to reduce this chronic inflammation with a ketogenic diet and avoiding refined vegetable oil