yes RLS still at 78

[Frea]

I have had restless legs for more than 40 years, but on the advice of a sleep specialist have been on Sifrol for 12 years.

starting on a low dose I now take .75 sifrol 3 times daily without any apparent improvement.

for the past 2 years I have used Med. cannabis oil but that too has been necessary to increase, and since we are planning a holioday in Asia I have had to wean myself off that as its not legal in the countries we will be in.

The augmentation I have is chronic late afternoon and evening... so I am planning to see a neurologist when we return home, hoping to be able to come off the sifrolh with help and possibly a substitute that is safe.

I feel that the sifrol has caused the augmenting, and wish I had never started with it.

any ideas ? Frea

[SueJohnson]

.75 mg sifrol is one and a half times the maximum of .5 mg. I hope you meant you are taking that as a total for the day as if you are taking that amount 3 times a day you are taking 4 and a half times the maximum amount and that is criminal to have been prescribed that much. Sifrol is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It and ropinirole 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. When you get back, to come off sifrol reduce by .125 mg every 2 weeks or so. 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. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off sifrol although it won't be fully effective until you are off it for several weeks. 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 1-2 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. (You don't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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 of pregabalin) daily." If you take magnesium 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). 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, especially at 1 and a half times the maximum amount, at Https://mayoclinicproceedings.org/a...

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 you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't t get an infusion, let us know and we can advise you further.

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

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.

[SueJohnson]

I see in looking at your past replies that you came off lyrica. Why was that?

[Joolsg]

Where are you based Frea? Sifrol is Pramipexole in Australia.As SueJohnson says, you are on a criminally high dose. And you will definitely be suffering drug induced worsening. You will need help from a knowledgeable doctor to get you safely off such a high dose. But you can start yourself now. Follow Sue's advice on how to reduce.

It will be VERY difficult but you will get no peace and no relief until you get off Sifrol. It makes the disease 1000% worse.

[Allyp69]

So sorry to hear this. At 76 I've never had any prescribed meds as I fear side effects. I use Therapulse and CBD oil when needed but don't have RLS every night...always at night but occasionally during the day. Listening to music using headphones helps me too. What we desperately need is a complete cure....and to find out what causes RLS...I take Gentle iron every 2 days at night..not sure if this helps?

[Joolsg in reply to Allyp69]

It will probably help as the majority of RLS patients respond to iron supplements.

[TheDoDahMan]

If you have a rough time getting off the Dopamine Agonist, a knowledgeable RLS doctor will allow you a low-dose opioid which will help tremendously.

[Frea in reply to TheDoDahMan]

would clonazapam be considered a low dose maybe a half or quarter as needed Frea

[SueJohnson in reply to Frea]

Clonazepam just helps you sleep and the problem with it is it has a long half life of 40 hours so it can make you drowsy the next day.

[TheDoDahMan in reply to Frea]

Clonazepam is a benzo, not an opioid. I have no experience with clonazepam. SueJohnson is about as knowledgeable as anyone regarding prescription meds.