I have been on Pramipexole for more years than I can remember. I was put on it at Walton Neurological Hospital by a Consultant. Last year another Neurologist tried me on Ropinirole which caused hallucinations.
I am back on Pramipexole and during my years on it have suffered from overeating and excessive spending.
My restless legs are so bad that sometimes even on pramipexole the pain breaks through.
At times so bad that I can go 4 days and nights without sleep.
Nobody seems to want to try something else but , I desperately want to come off it.
Any help would be really appreciated. A lady called Sue Johnson seems to be very knowledgeable but I can't find her post on how to reduce the drug and what to use its place.
Written by
Onion01
To view profiles and participate in discussions please or .
You sound as if you are suffering from dopamine agonist related augmentation and impulse control disorders and will need to come of pramipexole VERY SLOWLY and move on to gabapentin which you say has recently been prescribed.
I don't know enough about the brain injury and consequent epilepsy that you mention in your bio to know how much that may complicate your situation.
I am sure SueJohnson will be along shortly and will repeat her specific and general advice: don't do anything until then.
Meanwhile, just to clarify:
1. You're still taking pramipexole? How much are you now taking each day?
2. Are you already taking the gabapentin and co-codamol (Zapain) that you say in your bio has recently been prescribed? If so, how much of each and when are you taking them?
3. Are you taking any other medication?
4.Have you had a full iron panel blood test and if so what were the resultant numbers?
5. Which country are you in? We have members from all over the world (Sue for example is in the US): there's a Walton Centre for Neurology and Neurosurgery in Liverpool - so are you in the UK?
Collagen makes RLS worse for most. Fluoxetine an SSRI antidepressant makes RLS worse for most. Safe ones are Wellbutrin and trazodone. The others are OK.
Sorry, only just spotted this - thankfully Sue was able to answer. And you'll have seen Sue's earlier reply to you - further down this chain - giving advice on coming off pramipexole & moving to gabapentin/pregabalin.
Unfortunately the majority of UK doctors and indeed neurologists are ignorant/out of date on RLS: they are not taught about it and most have not read the latest (US) research and guidance.
It seems Chris that you are absolutely right. Just saddens me when I think how debilitating RLS can be and yet some very eminent Neurologists are so out of date with research etc.One again thanks for replying
You are taking pramipexole too? How long have you been taking it and how much are you taking? Have you had a full iron panel blood test and if so what were the resultant numbers? What other medications are you taking, if any?
Thanks so much for responding. I have a feeling that the doctors who have attempted to help have very little idea about this condition. Sad, but true. I haven't had any bloods taken. The information on here is a revelation.
I'll try to precis a complex situation.
In January 23, I figured out that the 100mgs of Amitriptyline (for sleep) were triggering the RLS. Without guidance - halved the dose to 50mgs. All went well for approx three weeks and then hit major withdrawals. Sleeping around the clock, and suicidal ideation.
Sought help and began guided withdrawal. Have not been able to get below 50mg without dire consequences.
Prescribed 50mg Quitiapin. If the timing of the premipexole isn't in sinc, these have the same augmenting effect as the Amitrypiline.
Have had ME/CFS since 97 and have been on various SSRI's, for want of anything else that helps with the fatigue - currently take 120mg Duloxetine. This doesn't trigger RLS.
I am no longer to rest when I need to because, within ten to fifteen minutes, being prone triggers the RLS. Sometimes having to stand for up to twelve hours (worst case), and one symptom of ME is orthostatic intolerance.
During the Last conversation with my fabulous mental health practitioner we discussed hospitalisation to help and manage withdraw symptoms. However, it would appear from reading the data on here, I have no idea which medication needs to go first.
Unfortunately very few UK doctors or neurologists know more about RLS than is covered in outdated guidance from NICE and the NHS. They're simply not taught about it.
As SueJohnson replied to you, read her reply to Onion01 which you'll see immediately below in this chain: this explains and gives guidance on coming off pramipexole and going on to gabapentin or pregabalin, and about having a full iron panel blood test to check your serum ferritin levels. Plus other useful info.
Amitriptyline makes RLS worse for most so you really need to come off it if possible. Safer antidepressants for RLS are trazodone and bupropion: unfortunately in many parts of the UK it's not possible to get bupropion prescribed for depression, and in others you need a psychiatrist's approval. So talk to your doctor about trazodone.
Quetiapine is also known to worsen RLS, but you may need to stay on it at least for now: if you tackle the issues with pramipexole and amitriptyline that will hopefully reduce your RLS symptoms significantly.
To reduce the Amitriptyline you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it and then reduce by that amount on the scheduled timing you were using before.
Welcome to the forum. You will find lots of help, support and understanding here.
As Chris says you are augmenting on pramipexole and suffering from ICD and need to come off it.
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 ropinirole (pramipexole) because the slow releases ones can't be cut.
To come off pramipexole, reduce by half of a .088 [.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.
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 it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)
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. 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, 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). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 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, 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.
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.
Walton in Liverpool? Get a referral to Chris Murphy in Salford as he will prescribe opioids to help you through the withdrawals and to treat the RLS once off dopamine agonists.You have been poorly treated. Not unusual. Neurologists aren't taught RLS in the UK and are at least 10 years behind best practice.
Please speak to a solicitor. Angharad Vaughan at Leigh Day or Kimberley Bradfield at Switalskis.
As you clearly have Impulse Control Disorder, a serious, common side effect, the neurologists should have advised you to slowly reduce dopamine agonists and start pregabalin/ gabapentin or a low dose opioid. You can claim back all the money you've 'overspent'.
Follow SueJohnson advice to get off the dopamine agonists very slowly. Withdrawals are hellish, but, you'll never be free of RLS until you get off these drugs.
I'm just getting so sick of the appalling negligence out there. You have been badly let down.
Please also report the drug induced worsening and the eating and spending via the Yellow Card Scheme. Otherwise these doctors will keep prescribing this poison.
Thanks for taking the time to reply and the information you have given me. I really do appreciate it.I live in the UK and at the time I was attending Walton Neurological Hospital I was living in North Wales. They contracted out for alot of Specialisms. I had a Neurologist in Wales for Epilepsy and a separate one in Walton for RLS and migraine. I did attend Salford Royal Hospital for a week, seeing professor Rhodes as some of my previous Epilepsy medication has caused a severe sensitivity to UV .
If you're in Wales still, you can see the best doctor for RLS in the UK..You'll have to travel to Cardiff but Dr Jose Thomas at Abergavenny Sleep Clinic is the most knowledgeable doctor in the UK on RLS.
He will help you by prescribing iron infusions, if needed, and Buprenorphine or methadone.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Replacing Pramipexole with Pregabalin
Shortage of Pramipexole 0.18mg? UK
Pramipexole has made RLS worse
PLMD and pramipexole 
Pramipexole / Pregabalin
