Advice please/weaning off Pramipexole for RLS.

[Riversong]

I am weaning off Pramipexole, was on 0.088mgs six tablets daily for over 20 years, augmentation severe for some time now so with help from Forum and supportive GP found Neurology Consultant, Dr Chris Murphy, I could see within reasonable travel distance and made private appt. NHS wait 13 months. Have weaned off DA very slowly by halving tablets and then letting symptoms settle but whole process is really brutal, hours of involuntary movements, spasms, burning, in legs and arms. After two months, completely exhausted, mentally and physically.

Understand sound advice re iron panel, Ferritin etc as I am a retired health professional but my primary goal is to first get off these DA drugs that are now lighting the fire of this disorder.

For those forum members who have done this process, can you advise me how long the awful symptoms lasted once off these DA drugs? Appreciate other drugs often added in to help.

Forum and RLS UK great resources, I agree with comments made this year about how something this dreadful can have such an innocuous name. Restless legs sounds so trivial but we know it could be better called ‘physical torture’ syndrome to convey what it's like having this. As more information comes to light about DA drugs, and people are reporting ( UK) side effects through the Yellow card scheme, would be good to see addition of information about what happens if you augment on DA and have to stop taking these drugs. Augmentation is listed but not the ‘ weaning off process’. Please tell me there is light at the end of this tunnel. Wherever ‘ Wits End’ is, thats where I am.

[Joolsg]

It took 2 months after my last dose of a DA for me to feel human.I had PTSD for a year. I couldn't sleep with the lights off. It was a dark time.

After DAs, I started on tramadol and gabapentin but they did nothing. I switched to 25mg Oxycontin and 150mg pregabalin and for a year it was ok. I still had severe RLS every night for 2 hours and was woken at least twice every night.

However, as the daytime RLS had disappeared and I managed to sleep for 4 to 5 hours between 6am and 10 am, I accepted it. Then the RLS played up every evening for 2 hours & woke me 3 times a night.

And Prof Ray Chaudhuri told me it was the best I could expect and there was NOTHING else available.

Glad this forum exists because Shumbah posted about her miraculous result on Buprenorphine.

And after 5 wasted years on pregabalin and Oxycontin, I pushed for Buprenorphine and it worked the first night.

And since then, zero RLS ever. My health is the best it's been in many years, physically and mentally and I sleep 8 hours every night.

There is DEFINITELY light at the end of the tunnel. Many of us are off DAs and so much better.

I even know a few people who have got off DAs and had an iron infusion and are med free. Others do well on gabapentin or pregabalin. But bear in mind gabapentinoids often don't work after augmentation on DAs.

So stay strong. Try raising serum ferritin via pills/infusions. Try gabapentin or pregabalin for at least 3 months. But if they don't cover the RLS, switch to an opioid. Many do well on tramadol or oxycodone. I didn't. If these short half life opioids don't work- push for Buprenorphine.

[MrCrow in reply to Joolsg]

Have you had restless legs since childhood? Or is it something that developed later?

[Joolsg in reply to MrCrow]

My RLS is likely caused by brain & spinal cord lesions. 30% of MS patients also have RLS. So I developed RLS in second pregnancy, aged 38 when I had a massive MS attack & ended up in hospital for 10 days.After the attack the RLS was severe and permanent- every single night.

[Riversong in reply to Joolsg]

Thanks Joolsg, that is really helpful.

[SueJohnson]

My 3rd laugh for the day, although not really funny - it could be better called ‘physical torture’ syndrome🤣🤣🤣

[SueJohnson]

You have probably seen this but let me give you my usual advice. To come off pramipexole reduce by half of a .088 tablet as you have been doing 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.

As you know 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 them but they are not up-to-date on the current treatment recommendations.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 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 and your symptoms have settled. 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.

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 or magnesium-rich foods, 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 nor calcium-rich foods 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)."

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, low potasium. 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.

[Riversong in reply to SueJohnson]

Many thanks Sue.