Needing some advice please, if anyone can help .

[Cobimilo]

Hi everyone, I'm new to this group . I suffer really bad with RSL for many years now gp has put me on pramipoxile 0.088 mg going back a few yrs talking 6 tablets a night 3 night's out of 7nights is fairly good for sleep for me . Has anyone got any other recommendations as I feel I'm going around in circles with the GP , they want to reduce the tables for me to go on another medication . Trying to explain to GP I never manage without the full dose that I'm taking. Please if anyone has any recommendations for me , I be more than greatful ..

[Madlegs1]

Your GP is trying to help you by advising you to reduce an extremely high dose of Pramipexol.

You are hiding from reality--- you really need to get of that medication completely. Very slowly and by very small bits.

Please read up any of Sue Johnson's replies to many people in your situation.

Also read up about augmentation.

You are going to have to be brave, and get a lot of help from your doctor.

Good luck.

[Cobimilo in reply to Madlegs1]

Thank you for getting back to me with your thoughts. I shall read up on the advice you have given. Thank you

[ChrisColumbus]

Welcome to the forum.

While UK doctors in general know little about RLS, your doctor is correct that you have augmented on too much pramipexole and you need to taper off this slowly to move to a new medication.

Read up on augmentation here:

rls-uk.org/augmentation-reb...

Then read the guides on Iron Therapy and Dopamine Agonist Withdrawal Schedule towards the bottom of this linked page:

rls-uk.org/useful-resources

Then come back here with any questions!

[SueJohnson]

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

The maximum dose of pramipexole is 4 tablets so you are way over the maximum and suffering from augmentation as the others have said and do need to come off it.

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

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.

To come off pramipexole, reduce by . half of a .088 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.

The beginning dose is usually 300 mg gabapentin (75 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.

[Horses7 in reply to SueJohnson]

I've been on .25 of mirapex for at least 10 years, was getting augmentation worse in afternoon and early evening. It's taken me months to get off the mirapex, the withdrawal is not pleasant however I did it very slowly my final dose was 1/4 of a .125, each time I reduced the dose it was worse for a few nights then it settled down and I'd reduce again. I'm glad to say this is my first week totally off mirapex. I started taking pregabalin a while ago working up to 150 mg, I'd rather not keep increasing it as it can make you a bit loopy I find. My rls has improved 95% however with time not sure if 150 mg will be enough? I'm 72 and have always heard that as you get older you don't need as high a dose of meds as younger people. I asked the pharmacist what was the lowest dose of pregabalin you can take for rls she said 150 mg. My question is do you agree and what has your experience been with pregabalin dosing for older people with rls. Thanks in advance.

[SueJohnson in reply to Horses7]

Congratulations for getting off it! Not easy but you did it.

Older people do need lower doses but everybody is different in how much they need to control their RLS. For example I'm 83 and need 250 mg. Since this is the first week off mirapex you are still having withdrawal symptoms so the fact that the 150 mg of pregabalin has improved things by 95% is a very good sign and after a few weeks may very well control your RLS 100%.

[Horses7 in reply to SueJohnson]

Thank you very much I appreciate your knowledge and input with regards to rls and meds ec.

[Joolsg]

youtu.be/h5Hyhmxli54?featur...(Not working as expected?)

Watch this video. It explains everything and why you have to get off Pramipexole.

I'm actually encouraged that there's a GP in the UK who realises you are suffering augmentation and have to get off Pramipexole.

Go slowly,following SueJohnson schedule.

[TheDoDahMan]

It is highly likely that the most important factor in your quest to recover from the augmentation that years of pramipexole has caused you, is whether you can find a doctor smart and brave enough to prescribe you low-dose methadone or buprenorphine therapy to spare you the agony that almost certainly will accompany the tapering down process of getting free from the pramipexole. These two meds have a long half-life, which is important in providing you relief from the seven levels of hell that occur when tapering off dopamine agonists.