Hi my story is much the same but full detail in my bio. I recently moved from 5 x 0.88mg Pramipexole to 150mg x 3 a day Pregabalin. My GP just switched with no weaning period, i thought this was due to the effect of Pregabalin. After 4 nights no sleep and numerous side effects i tend to think this was the wrong move by my GP. Anyone else experienced this change and how long before i don't spend the night working. Ty
19082025 - update after a call with my GP (still dont get face to face all the time). He won't prescribe opiods, he has put me back on Pramipexole 0.088mg 4 at night, reduced my Pregabalin to 25mg at night. Another appointment in week to see how im doing.
Welcome to the forum. You will find lots of help, support and understanding here.
Absolutely the wrong move!!! Almost criminal . Go back on your 5 x 0.88mg of pramipexole which is more than the maximum amount of pramipexole which is 4 tablets.
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 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 but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)
The beginning dose is usually 75 mg pregabalin. 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 and your symptoms have settled. After you are off pramipexole for several weeks 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin 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 . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 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 up-to-date 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, 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.
You need a new doctor. What city do do live in. I may be able to give you a name of a knowledgeable doctor.
Omg wow that's so much to take in. I'm in the UK, Thornton-Cleveleys. I have been off the Prami for 6 days now, what would happen if i just carried on.......Ill get my ferritin checked and book in to the GP tomorrow.
Dr Christopher Murphy - Consultant Neurologist . Runs a Sleep Clinic. Alexandra Hospital, Mill Lane, Cheadle SK82PX. This is outside of Manchester, Appointments phone 0161 495 7000. You will have to pay privately. HOWEVER you must insist you don't want the Neupro (Rotigotine) patch because it is also a dopamine agonist. He may say you are less likely to augment on it but that has been disproved. Otherwise he is excellent.
If you just carry on you are likely to suffer for months and won't sleep. I don't advise it.
Please, please, please file a formal complaint AND direct your useless GP to RLS-UK website. We will continue to be treated negligently until GPs actually read and learn about the disease.Also file a yellow card report about why you stopped Pramipexole as we have to get these drugs banned.
As you're off Pramipexole, it may be worth gritting your teeth and dealing with the awful withdrawal. And ask your GP for a low dose opioid to help settle severe withdrawals. They will last another month and you'll get little to no sleep during that time. So sleep whenever and wherever you can.
Most people will suffer whether either way.
Or you could go back on a slightly lower dose and withdraw properly.
Pregabalin should be started SLOWLY, at 75mg at NIGHT only and increased by 25mg every other night up to 150mg.
Starting you on the highest dose, 3 times a day is totally wrong.
You now realise UK doctors know absolutely sweet FA about RLS, so be your own advocate. Spend a few hours reading this site and the RLS UK website, particularly augmentation and treatment and iron therapy and withdrawal. Under Useful Resources.
Most people who need to come off Pram seem to go through mild to severe side effects coming off it, even with the help of other meds. I weaned slowly off Pram and had mild withdrawal imparted to some but in the end I went cold Turkey but started Pregabalin. It has taken several months for my RLS to settle and my life to have some consistency. I’m now on 350mg of Pregab. RLS well controlled but PLMD is not good at all. Other side effects now are insomnia and/or difficulty waking, staying awake when sedentary and needing too sleep during the day. I do take other meds that are known to exacerbate RLS/PLMD but haven’t been able to successfully stop them. Hope that ‘helps.’
Hello, I would suggest you change your doctor. You really need to get off pramipexole. It will do more damage in the long run . I tried pregablin but it did not work for me. I am totally off pramipexole and am on Gabapentin. It takes a few weeks for things to settle down but it is well worth it. Good luck
Thanks, i just read his notes on patient access and he didn't write anything i said to him, totally dismissed i was having horrific withdrawal, I'm shocked he was so inaccessible as having any concern for my wellbeing. He just said your withdrawal will stop when you start taking prami again.
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