I started RLS in 2006. I was put on various dopamine agonists by GPs who dont understand. Nothing works. I got to 4 x 0.088 Pramipexole and was finally in the augmentation stage, i have reduced to 2 tablets and cant reduce because the body shocks are so severe.
Last night I tried halving a tablet but was a terrible night with no sleep. I have felt suicidal many times. I will try again tonight but with sleeping tablets. There is so much bad publicity about Pramipexole and doctors cant help. I survive on very little sleep.
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You will NEVER be free of severe RLS until you get off Pramipexole.Pregabalin does NOT work while you are suffering severe augmented RLS.
Where are you? You will need an opioid to get you through the next stage.
Reduce Pramipexole by half a 0.088 pill every 2 weeks. You take a low dose opioid like 60mg codeine/50mg tramadol/10mg oxycodone for 4 or 5 nights after each reduction.
Your GP readily prescribed dangerous Pramipexole. Now they can help get you off the poison.
Print off iron therapy and withdrawal schedule from RLS-UK website. Discuss with your GP and demand help.
You may need to see a specialist to help you through the next stage.
Welcome to the forum. You will find lots of help, support and understanding here.
Who is the doctor that kept prescribing dopamine agonists?
I agree with Joolsg. This is my usual advice which repeats some of what she said.
Ropinirole, pramipexole (Mirapex) and the Neupro (rotigotine) patch 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 uptodate on the current treatment recommendations. NICE in February changed their recommendation to say gabapentin/pregabalin should be prescribed and not DAs so print that out and take to your doctor.
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 if needed.
Since you are suffering now, I suggest you go back up by one half of a tablet and let your symptoms settle before starting your reduction again.
To come off pramipexole, reduce by half of a .088 tablet 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
If reducing this way is still too hard you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. Won't work for buprenorphine in US
On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) 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 withdrawal symptoms have settled. 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 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 divide the doses on 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 of pregabalin)."
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 or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).
Have you had your ferritin checked? If so what was it? This is the first thing a doctor should do for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 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. 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 get an infusion, let us know and we can advise you further.
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 at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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, 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.
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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender and any other health conditions you have.
And if you need a new doctor and you tell me what city and country you live in I or Joolsg can recommend a knowledgeable doctor.
Hi, I've been exactly where you are and it is a living hell. It took me a year to come off Ropinirole. It's a slow reduction with immediate knock-back with the symptoms but then they ease off before you then reduce again. It was the mild opioid Buprenorphine that really worked for me and this is what you need to get you through this. The minimum dose is 200ugm (micro-grams) but that is all you will need. I do hope and pray that your doctor will prescribe it for you.
I was exactly where you are 6 weeks ago, twelve years of agony. I tried the Gabapentin/pregamblin route and that didn’t work for me. I begged for a low dose opioid and went to my Dr with all the information I gleaned from this forum in hand. He prescribed methadone and I am now off all other RLS drugs. I am sleeping and wiggle free. Hang in there, there is light at the end of of the tunnel.
Hi. So many of us have been through the Pramipexole cycle. There is life after, if you can find a way of successfully weaning. You may have to try a few remedies until you find one that works for you. Heed the advice you are given here and you will make it, I’m sure. My best to you.
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I cant take it anymore I want to chop my legs off! I am taking mirapex which helped for a year then I had to keep upping the dose.Now my 
Pramipexole tablets seem to be miracle cure but.....augmentation??
I saw Dr Ray Chaudhuri at Kings Collage Hospital yesterday He has reccomended Neupro patch. Can anybody give me some advice
Pramipexole not working now. 
