Shocked!

[TVC3]

Literally googling as unable to sleep, despite upping my Pramipexole last year, to find out about Augmentation!!! (This answers all my recent questions to the issues I am having!!!) Why has my NHS GP not told me that for these reasons Pramipexole is only now given in end of life care!!!! And then read on the website that coming off this med is "...more difficult than withdrawal from Heroin and Crystal Meth."!!!! And that ypu need 3 weeks off work and someone with you for the first 5 days!! What the he'll? 😓 xxx

[ChrisColumbus]

Welcome to the forum, and do not despair: there is plenty of help here from people who have been through dopamine agonist augmentation and withdrawal and can give you the best advice on how to proceed. It will be useful to know where you are, how long you have been on pramipexole and how much you are taking? And have you had a fasting full panel iron test to determine serum ferritin levels, and if so what were the results?

Having been lucky enough never to have been on a DA myself I won't try to pre-empt their expert advice, but  Joolsg  SueJohnson et al will be along to help you before too long. Meanwhile read their Replies to this recent Post:

healthunlocked.com/rlsuk/po...

Unfortunately NICE/NHS is not fully up-to-date with the latest research and practice, so please wait for further guidance here before taking any precipitate action. If you haven't already found the RLS UK website please check it out - particularly the sections on augmentation, medications to avoid, medical treatment and the PDFs on iron therapy, DA withdrawal and impulse control disorder at the bottom of the Useful Resources section:

rls-uk.org/

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Ropinirole, pramipexole and Neupro (rotigotine) 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.

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 .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. 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.

On the gabapentin or pregabalin, 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. 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 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? 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.

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.

[SueJohnson]

If you want to read more I recommend these sites

rls-uk.org/

jcsm.aasm.org/doi/pdf/10.56...

relacshealth.com/blog

I also recommend you join the Restless Legs Foundation at rls.org especially if you are in the US. An international membership is $40 and they have lots of information on their site and a monthly magazine.

[Joolsg]

It is a shock when you realise your doctor has prescribed a drug that actually makes the disease far more severe over time.Studies on the rates of Augmentation are set out in UK NICE guidance, but that is discretionary. Doctors do not have to follow it. Also, the studies are outdated and it's clear that nearly every single person taking a dopamine agonist will experience drug-induced worsening eventually. It might happen within 6 months, 6 years or 12 years. But it WILL happen.

If you look at posts on here or FB help groups, there are people boasting that they've been on Dopamine Agonists for years and it's working for them. But, you then discover that, actually, they are augmented. They can still sleep. But the RLS has become much more severe. They have increased the dose. RLS starts earlier in the day when they're on a long car journey/flight/cinema.

New studies are needed to reflect the current tsunami of augmentation cases.

And UK doctors MUST learn about RLS and the dangers of dopamine agonists.

SueJohnson and ChrisColumbus have set out what you need to do.

1. Raise serum ferritin ( show GP the Iron therapy page under Useful Resources).

2. Review/replace all trigger medications ( under medications to avoid)?

3. Start pregabalin or gabapentin as per RLS-UK meds table around 3 weeks before you drop last dose Pramipexole.

4. If gabapentinoids do not work- start a low dose opioid- preferably a long half life opioid ( methadone/Buprenorphine).

And help change things by educating your GP, filing a Yellow Card Scheme report so the MHRA is aware of the scale of suffering and join RLS-UK so you are aware of studies/campaigns.

Withdrawal is brutal. You will think you can't make it. But keep going. Once you're off Pramipexole- your dopamine receptors will start to settle and you will find the right meds for you.

Many members are still fighting their GPs for the right treatment. Just read posts from the last week.

The more you learn, the better you will be treated.

Good luck.

[Kasp]

Yeah it's crazy. UK is so behind on many things like that unfortunately. I tried to convince my GP by showing all this info I've learnt on this forum but he just said that I shouldn't Google things.When I was prescribed Pramipexole last year it was like giving me paracetamol without any explanation on what this drug can do whatsoever..

Good luck

[SleeplessinNC]

Follow the great advice on this forum. I’ve been through DAWS after augmenting on Pramipexole. Brutal but you can do it . I thought I’d have to give up — my docs even suggested going back on the D.A. at one point — but I stuck it out through some dark days and you can too. I’ll be thinking of you. Best of luck.

[teakabeagle]

I do not believe there have been any statements as to use ONLY in end of life scenarios. AASM put in a disclaimer that essentially says prescribe when the risks( ICD and Augmentation) are less important than relief of symptom. That could certainly include end of life scenarios, but also for the patients that do not get relief of symptoms or don’t tolerate any other medications, or it is the only treatment they can get where they live.

[HilsK]

TVC. .. i was given Pramipexolefor 15 years in increasing doses to deal with symptoms of familial RLS which i had had from a very young age. i ended up in 2017 with augmentation in which all symptoms affectalll my skeletal muscles. They tried to get me initially get me to go cold turkey .. which nearly killed me .. and then tried to reduce it a few micrograms ata time. it wasn’t until i met a neurologist at Royal Stoke who guided me to it’s reducetion against an increase in various drugs : carbamazapine , oxycodon and gabapentin .. i managed to get down to 1.56 micro g morning and evening with support of these other drugs. There is no easy way.

The withdrawl symptoms were so severe that ii had to be hospitalised into a hospital that has no idea about the drug use or RLS . Their ignorance and unwillingness to learn about RLS in conjunction with my long term illness, nearly killed me ion three occasions. i had to take legal action so that they have to adhere to the Neurologists instrutions. One doctor ignored this last year. but as as it is highlighted automatically if i am hospitalised on a hospital passport, he was hld personally responsible. .

These are the lengths i have had to go to. i suggest you must see a neurologist who TRULY understands RLS. Not tends he knows. They do NOT prescribe it on end of life care. My husband had RLS and he had dementia. They refused to medicate him for it… simply putting it down to dementia. They certainly did NOT give him Pramipexole to relieve his spontaneous leg movements in the 2 weeks he died. indeed the drugs he was given made his restless much worse and they would not increase his dose or listen to me.

There are consultants in the UK who are very good and some individual GPs. i dot know where you live but there are people here who do have details of these doctors. please ask if you need help … don’trely on google. Good luck . you can always message me if you want to know the Consukants name

[ShakeRattleRoll]

TVC3, everyone is different but this site may just change your life. I started Ropinorole over a decade ago. My dosage increased over the years and in December I discovered through this website that I was taking 4x the max dosage. I had horrible augmentation and fought with RLS, day and night. I slept 3 or 4 hours at best. My neurologist finally realized what augmentation this medicine was causing, so he switched my meds to Pramipexole, then Carbidopal/Levodopa all of which are agonsit and just as bad. Later Trazadone and Pregabalin to help ween me off this addiction. Nothing worked. The crazy thing for me was the cure was the cause! Over Christmas through New Year's I tossed all these medicines, along with alcohol, antihistimines and even medicine for GERD in the trash. I spent two weeks walking the floors, naping, eating pure food as I could - all while trying to remain determined.

Its been a month and I'm on the other side now. Occassionally I wake up at night squirming a little but I stretch then right back to bed. I average 6 to 7 hr. sleep, and most importantly each night I feel less afraid that this nightmare we call RLS will return.

There are safer, smarter ways to reduce your dependency than this. The people here will educate you on RLS and teach you about agonists influence of iron, B6, etc. and will help you step down slowly. Its time to take back your life! I wish you the best in this journey that only those of us with severe RLS can understand!