ASHA AND CHEWIE

[ChewieandAsha]

I resently started Lyrcia 75mg for my restless legs I stopped taking Sifiol which I had been on for 20 years three times a day .My doctor gave me the Lycria 75mg to take at night but it did nothing I have been going crazy from 2pm each day . Went back yesterday and the doctor increased the dose to 150mg at night but what is going to help me during the day? I live in NSW Australia. I am 71years old and female. have recently had an iron infusion so my iron levels are fine .Can you advise me what to do during the afternoons please?

[SueJohnson]

Did you stop the sifrol suddenly or recently? If so you are probably suffering withdrawal symptoms. On the pregabalin it takes 3 weeks to be fully effective and won't help much until your withdrawal symptoms have settled.

[Restylegs]

I've been on lyrica and gabapentin a few times now the doctor keeps thinking that's the way to go , but nothing what ever dose I get. Put 5kgs on that could be handy if ur skinny always end up on sifrol

[Munroist]

if you came off Sifrol suddenly you may be experiencing severe withdrawal symptoms which won’t be covered by the pregabalin. Sifrol contains Pramipexole which is a dopamine agonist and it’s advised to reduce the dosage slowly over a long period of time to avoid withdrawal. It may not be easy to do so but it’s normally better than stopping cold turkey. Until the dose has reduced significantly you are unlikely to get any benefit from pregabalin or gabapentin.

See here for an example of a reduction schedule.

rls-uk.org/_files/ugd/b0a19...

[ChewieandAsha in reply to Munroist]

Munroist, I sure am suffering came straight off taking Sifrol three times a day to zero with just 75mg Lyrica at night to compensate. I am crazy with pain what can I take before I jump off a cliff .It is now 2.59am and I can no more go to sleep then fly. I tried to explain this to my GP yesterday but he does not understand. ASHA AND CHEWIE>

[Munroist in reply to ChewieandAsha]

The normal advice is go back up to your previous dose of Sifrol that was working or at least to a dose that gives you enough relief to be tolerable and then start to reduce by small amounts allowing the symptoms to settle in-between before doing the next reduction. There is no single right timing between the reductions as everyone copes diffferently. Some people can reduce the dosage faster than others and not everyone has the same side effects. The size of steps you can reduce by depends on what type of pill or dose you are taking. Ideally you would be taking several small tablets so you could for example reduce by one tablet a day at first, or maybe by half a tablet. If it's a capsule with powder then it's sometimes possible to empty and split the contents but it depends what form it comes. My first suggestion is to speak to the doctor to see if you can get small dosage tablets so that you can reduce in small amounts. If the reduction is bearable then wait until you feel ready to make the next step down.If you reduce by too much then you may have to go back up. I'm afraid there's no one size fits all schedule but the document above gives the principles for getting off dopamine agonists.

[SueJohnson in reply to ChewieandAsha]

I agree with Munroist. This is my usual advice. Go back up to the dose you were on and at the times you were on. Wait until the symptoms settle.

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

To come off sifrol reduce by half of .125 tablet every 2 weeks or so. You will have increased symptoms. 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.

Normally you would start lyrica 3 weeks before you are off sifrol although it won't be fully effective until you are off sifrol for several weeks. You are already on 150 mg. I would not increase it any more until then. After that increase it by 25 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. 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 200 to 300 mg lyrica."

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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist 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(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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.

[Joolsg]

As others advise, after 20 years on Sifrol, you need to take at least 6 months to slowly withdraw.Any faster, and you will still be suffering severe withdrawal which lasts for months.

Also average pregabalin dose is 150-200mg and it takes 3 weeks at FULL dose to start working.

Take 150mg at night and also ask for blood test result.

They tell you it's 'normal' when it isn't. RLS patients need much higher levels.

Serum iron above 60ųg, serum ferritin preferably above 200ųg.

If raising iron levels and taking pregabalin at 150mg/200mg doesn't help after 3 weeks, you may be a 'non responder'. It is quite common after augmentation on dopaminergic drugs like Sifrol.

You will then need to switch to a low dose opioid, preferably methadone or Buprenorphine which have long half lives and cover RLS 24/7.

[ChewieandAsha in reply to Joolsg]

I tried to get at Least codeine yesterday but he would not come round thinks I just want more drugs .I really am beside myself tonight do not know what to do .I have been massaging my legs every couple of hours but what else is there to try? I am not near any hospitals or clinics and it is the weekend as well. ASHA AND CHEWIE

[Joolsg in reply to ChewieandAsha]

If you can buy paracetamol and codeine in your local pharmacy, you can try that.If your doctor refuses opioids, you may need to see a neurologist who is up to date and WILL prescribe them.

There are a few members on here in Australia, including RLSLearner & Shumbah and they may know a good doctor near you.

I only know of Dr Brendan Yee.

woolcock.org.au/our-experts...

[ChewieandAsha in reply to Joolsg]

Thankyou for all your HeIp. ASHA AND CHEWIE. I will Give the chemist a go in the morning Seeing a Neurologist takes about three months if your lucky.

[SueJohnson in reply to ChewieandAsha]

That's better than the UK where it can take a year. Can you get a private appointment?

[ChewieandAsha in reply to SueJohnson]

Sue I am seeing a specialist in September for my Rheumatoid Arthritis which I have been waiting since February but in the meantime I cannot go on like this.

[SueJohnson in reply to ChewieandAsha]

Go back up on sifrol and wait to make any reductions until you are able to see a neurologist who hopefully will prescribe an opioid.

[SueJohnson in reply to ChewieandAsha]

Print out and show your doctor the appropriate section from the Mayo Clinic Updated Algorithm on low dose opioids.

[ChewieandAsha]

I had an iron infusion last month so my iron levels are now well over 100.