I am a 69 year old woman struggling mightily to stop taking DAs. I am quite active and fit despite years of insufficient sleep. My life for the past 15 months has been defined by withdrawal from pramipexole.
I have been reducing my use of DAs (had been up to 3.5 mg pramipexole 15 months ago) due to augmentation and what I now realize was horrific care by an arrogant neurologist. I am now down to .50 mg and the journey is getting increasingly difficult. New neurologist (sleep specialist Weill Cornell NYC and much more competent than previous neurologist) has me reducing .0625mg at a time but even that is life altering requiring 2 weeks to adjust to this small taper. Symptoms break through earlier in the day, I can't sit for dinner, ride in the car for more than 1/2 hour, watch a movie, etc.., and additionally during the night, legs are aggressively activated and uncontrollable.
Currently take 300 mg Pregablin (split dose starting at 6 pm) and have tried to break up pramipexole dose to control symptoms starting at 3 pm. Totally exhausted. Opioids seem like another scary drug that will then require a difficult withdrawal regimen. Do they in fact stop the leg movements ? Aren’t they tremendously sedating? Quite reluctant to take opioids having seen 2 family members abuse them over the years and display disturbing mood/affect.
New Neurologist added the pregablin to help with leg movements as I taper down . Started taking 1/2 of a .25mg xanax when absolutely beside myself and/or small dose of THC gummy.
At this rate it will take another 6-8 months to get off the DA completely. That seems so long and has anyone taking .5 mg Pramipexole simply stopped the medication? Maybe a few days of deep distress would be better than this protracted schedule.
I have read suggestions to taper slowly but curious if others have adopted a different strategy to curtail the lengthy process. Many thanks.
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Julesjewels
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Welcome to the forum. You will find lots of help, support and understanding here.
The maximum dose of pramipexole is .5 mg so you were on 7 times the maximum and that was extremely cruel of your doctor.
You are reducing too fast. And the pregabalin won't help you while you are on pramipexole. Plus you may not need that much.
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.
To come off pramipexole, reduce by half of a .125 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.
Dopamine agonists like ropinirole, pramipexole and requip are no longer the first line treatment for RLS.
On the pregabalin, the beginning dose is usually 75 mg pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Normally you would 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 that normally you would increase it by 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. 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 of pregabalin."
Have you had your ferritin checked? If so what was it? 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...
Meanwhile 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 including HRT, 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.
Thanks Sue. I have read your recommendations and find them quite helpful. I am actually reducing by .0625 mg pyramipexole every 2-3 weeks and symptoms have worsened with each reduction. How do opioids work in aiding the reduction of DA dosage? Do they stop the leg movements or simply reduce the leg pain? While I do not have any concerns about becoming addicted to them, I have only observed friends/family using them post surgery. Seem to cause so much lethargy.
I was taking Buprenorphine during my last withdrawal from Pramipexole. The first withdrawal was done far too fast and was horrible, but settled in 6 weeks. I was on . 25 for 5 years and started having some symptoms , got freaked out and got off it quickly. While waiting for a visit with my current sleep medicine Dr. I went back to . 125 of Pram and quickly started having breakthrough and earlier symptoms, and increased to .25 mg and was on that for 10 months with mild escalation of symptoms and didn’t increase. After a month of no symptoms , I started withdrawing with small reductions every two weeks. Did well with no symptoms until the final reduction and had breakthrough that was annoying but easily managed with a brief walk. This settled over 4 weeks and has been controlled on .5 mg of Buprenorphine at night. I do get sleepy, but in the AM that has worn off. No effect on daily activities.
There is a really helpful Opioid study by Dr Winkelman at Massachusetts General Hospital. It is proving that low dose opioids for RLS are safe and highly effective. Unlike when used for pain relief, tolerance doesn't happen and nor does addiction ( unless history of abuse).Most patients with severe RLS will need meds for life. Studies show opioids are effective for RLS even after decades of use. Of course we're dependent. But so are MS and Parkinson's patients.
So do consider using a low dose opioid to get you off Pramipexole.
How appalling that your previous negligent doctor prescribed 3.5mg Pramipexole! The maximum dose is 0.5mg.
No. Dr. Dianne Augelli. She is Board Certified in Neurology, Internal Medicine and Psychiatry and is based in the Sleep Disorders program. She has recommended using opioids but I have been reluctant. Now that I realize how long this process will take, I am amenable to using them. The rage I feel towards my last Neurologist is beyond words.
Hi there, I’m 84 woman, RLS for 9 yrs probably 30+ yrs. I was prescribed Tramadol / Amitriptaline 1991. for Fibromyalgia. My dr discontinued the above telling me the it was addictive! From the first night after I didn’t sleep at all and after all meds weren’t helping me and at the end of my tether (9 yrs of hell)I was referred to a consultant who px methadone, Eventually I found 10mg x twice daily allowed me to sleep for 5-6 hrs from 1-2. I still have the tingles, crawling etc 24 hrs but I don’t need to walk constantly. I have had no adverse reaction. No side effects at all from Methadone and my life has been transformed with sleep. I can cope with the crawling and no longer want to kill myself. I trust that you will be helped as I have been.,God bless X
Amitriptaline is a tricyclic antidepressant that makes RLS worse for most. Safe substitutes are Wellbutrin and trazodone. Trazodone also helps anxiety an insomnia.
I am a 67 year old woman struggling to stop taking DAs and like yourself my life is currently defined by withdrawal (from Ropinirole). I am down to 1.75mg and again like yourself the journey is becoming difficult
I have learnt so much from this forum and thanks to Sue, Madlegs and Joolsg I have gained invaluable insights and coping strategies
I could not get through the day without the support of Codeine. I am aware of its addictive nature and use in moderation and with caution. I take the minimal dose and only when necessary. Codeine helps me manage daily activities, especially calming my symptoms enough to rest or sit at the dinner table.
I also have Impulse Control disorder and need to get off Ropinirole. I am reducing 0.25mg every two weeks with a goal of stopping by the end of April
I have referred to the Mayo Clinic guidelines (link in Related Posts called Opioids for RLS – some useful information)) for suggested doses of Opioids in Restless legs and take less than the starting dose and only when necessary. I split the dose into two or three portions and seem to need a higher dose at the start of every two weeks of Ropinirole decrease. Then the cycle of symptoms starts again…
Decreasing from 4mg to 2mg was manageable, despite the struggles of augmentation. I decreased initially by 0.5 (down to 3mg) and then by 0.25mg every 7 to 10 days. However, reaching 2mg brought intensified symptoms, requiring over two weeks to reduce to 1.75mg. Symptoms can now appear early in the day, and I will keep the tapering now to 0.25 every two weeks as you suggest.
Codeine has provided relief and has truly helped, though cautiously managed to avoid dependence.
Professor Walker at Queens has recommended trying Pregabalin, with concerns about possible side effects like weight gain and increased appetite. I have impulsivity, likely caused by the Ropinirole (food obsession and impulsive shopping are two of the three I have). If Pregabalin isn’t tolerable, alternatives like Gabapentin, Rotigotine patches, or Clonazepam are suggested. However, the Rotigotine patch is viewed negatively within this forum so I am hesitant to move onto that.
My question is whether to wait two months after stopping Ropinirole (by mid-April) to see if Codeine alone can manage symptoms while my body adjusts to being off of Ropinirole and avoid potential side effects of Pregabalin and simplify the adjustment process.
Ot start Pregabalin sooner as it could prevent the escalation of discomfort as I decrease Ropinirole further. This journey has taken over my life and has impacted my daily function. But I have learnt so much through the posts on this site and am truly thankful to you.
The pregabalin won't help while you are on ropinirole. It's your choice on whether you want to try to see if pregabalin controls your RLS once you are off ropinirole and the withdrawal symptoms calm down or whether you want to see if codeine controls it. I wouldn't wait as long as 2 months though.
I’m just chiming in as another person on opioids ( Oxycodone ). I have been taking what is considered a starting dose for over 10 years except for the brief time I was on Mirapex. I have never craved more except when trying to get on the correct dose. This past year I even decreased the dose I was on ( on my own) as I felt the extra 2.5 mg wasn’t needed. Am I addicted? Not any more than a diabetic that needs insulin!
I come from a family with a history of drug abuse. Up until a year ago, I had been using DA's to control my RLS for more than 25 years. Four years ago, I had attempted to withdraw cold turkey. Horrible! And unsuccessful. A year ago I started Buprenorphine and put the DA's in the rearview mirror without nearly the torture experienced in my previous attempt. Since starting Buprenorphine, I have never had the inclination to abuse it and my low dose has remained relatively stable. I might also add that before Buprenorphine I had been taking Codeine for 25 years as well without increasing my dose. In all likelihood you have nothing to fear from Buprenorphine, but of course only you can make that decision. All I can say is that since starting Buprenorphine, RLS symptoms are rare. Of course, Buprenorphine can cause unwanted side effects and I have experienced a few of them, including depression and mood swings, but dealing with these side effects is not nearly as crippling for me as the dopamine agonist were.
Without a doubt there is a stigma associated with using opioids. I have been taking them for 25 years and often felt ashamed and fearful when using them. The opioid epidemic is real and tragic, but the backlash against them has unfortunately kept people who would use them responsibly from getting relief from their suffering.
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No methadone
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